Parental Hope for Children With Advanced Cancer

Abstract

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. WHAT'S KNOWN ON THIS SUBJECT:Although physicians worry that communicating about prognosis or life-threatening illness can take away hope, previous work suggests that prognosis communication may even enhance hope. The nature of hopes held by parents of children with advanced cancer was not previously understood.WHAT THIS STUDY ADDS: Parents in our study frequently recognized their child' s poor prognosis, yet held many different hopes, including for cure, quality of life, and meaningful relationships. Parents who hoped for cure often recognized that this was not possible for their child.

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

“…We have previously reported on the content of prognosis communication as it relates to parents' hopes for their child. 16 This analysis focuses on parental reactions to prognosis communication, including their reflections on specific statements used by clinicians. The study was conducted at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Massachusetts, between February 2010 and October 2013.…”

Tumor Talk and Child Well-Being: Perceptions of “Good” and “Bad” News Among Parents of Children With Advanced Cancer

“…Furthermore, parents of children with advanced cancer may have hopes (for a long life) and expectations (death from disease in weeks to months) that appear contradictory. (16,17) Such psychological frames shape parents’ perceptions and influence their decision-making. (18,19) Previous work suggests that parents may(20) or may not(21) feel tensions between seemingly contradictory hopes and expectations, whereas pediatric healthcare providers frequently do.…”

Clinical Nurse Participation at Family Conferences in the Pediatric Intensive Care Unit

“…Human communication necessarily involves three basic and often conflicting goals: task goals, relational goals, and identity goals. Patients and families want information, support for their decisions, continuity of care, assurance that suffering will be avoided, and to participate in decision making (12, 31–34). These are task goals, or the topics of the conversation.…”

“…In addition, a growing body of literature calls for the inclusion of early, regular exploration of values and goals, and provision of emotional support to families during family conferences (9–11). There is evidence that these additional components of communication in formal family conferences infrequently occur (12–14). The role of other care providers, who have additional perspectives and information about the patient and family, is poorly understood, and is of interest given these findings.…”