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

Abstract

Context Little is known about how parents of children with advanced cancer classify news they receive about their child’s medical condition. Objective To develop concepts of “good news” and “bad news” in discussions of advanced childhood cancer from parent perspectives. Methods Parents of children with advanced cancer cared for at three children’s hospitals were asked to share details of conversations in the preceding 3 months that contained “good news” or “bad news” related to their child’s medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items. Results Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of “tumor talk” or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. Conclusion A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child’s well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.

“What if?”: Addressing uncertainty with families

“…Timing of “what if” conversations is important to give patients and parents an opportunity to discuss concerns and future possibilities at a stable time when patients and parents are more able to listen, ask questions, provide perspectives, and retain information. This is supported by recent findings that parents of children with advanced cancer reported limited ability to express hopes and worries during “bad news” discussions . Therefore, we recommend having these “what if” conversations during times of clinical stability or even during “good news” conversations.…”

“…This is supported by recent findings that parents of children with advanced cancer reported limited ability to express hopes and worries during "bad news" discussions. 24 Therefore, we recommend having these "what if" conversations during times of clinical stability or even dur-ing "good news" conversations. In particular, these conversations can be broached prior to times of known transition, such as at the end of treatment, before routine imaging scans, or at regular posttreatment visits.…”

Development of the “Day 100 Talk”: Addressing existing communication gaps during the early cancer treatment period in childhood cancer

“…The implication is that providers are “listening for” cues that may not come, and missing opportunities to elicit and meet their patients’ and parents’ needs. 11,29 Unfortunately, this reliance on surmising may hinder providers’ stated strategy of tailoring their approach to each family. It may also set up the cancer care relationship for a rocky future course, if all parties expect the provider to intuit the patient’s and family’s needs.…”

“…10 In advanced childhood cancer, approximately one-third of parents report limited abilities to express hopes and worries during discussions of their child’s medical condition. 11 These findings suggest a need to focus on fostering open communication and deepening the therapeutic relationship earlier in the illness trajectory. Specifically, revisiting initial discussions may facilitate parental illness understanding, agency, and trust during the ensuing months to years.…”

How parents cope with the care of a child with epilepsy: Based upon grounded theory

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