Communication about diagnosis and prognosis—A population‐based survey among bereaved parents in pediatric oncology

Abstract

Introduction:When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.Objectives: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.Methods: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness. Results:A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87% of children received diagnostic information and 44% of the children received prognostic information. Conclusion:A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed.

Prognosis Communication in Pediatric Oncology: A Systematic Review

“…Regarding trust, from the six (35.29%) QD studies [ 11 , 16 , 20 , 24 , 27 , 30 ], it was observed that most parents trusted their physicians/hospital/treatment highly or even completely (n = 1139, 73.01%). However, about a fifth of caretakers (n = 326, 20.90%) declared low levels of trust.…”

“…However, about a fifth of caretakers (n = 326, 20.90%) declared low levels of trust. Regarding parental distress, from the four (23.53%) QD studies [ 11 , 12 , 20 , 24 ], it was observed that most parents (n = 365, 46.68%) claimed moderate levels of distress or a need for psychosocial support. However, about a third (n = 269, 34.40%) signaled high levels.…”

“…A total of 19 studies featured some form of data. However, of these 19, only seven (36.84%) focused on detailing communication characteristics in pediatric patients [ 13 , 15 , 19 , 23 , 24 , 30 , 31 ]. Again, the data were not homogenous.…”

“…Pooled together, there were 3122 total children. Ten (52.63%) studies [ 11 , 13 , 15 , 16 , 19 , 23 , 24 , 28 , 30 , 31 ] reported whether children were present alongside their parents during the discussion regarding disease prognosis. Only about a third (n = 839, 36.02%) were.…”

“…As such, most patients suffered from hematologic malignancies (n = 1434, 46.56%), followed by solid tumors (n = 1217, 39.51%). Regarding hematologic malignancies, which were present in 14 (73.68%) studies [ 11 , 13 , 14 , 15 , 16 , 17 , 19 , 20 , 24 , 25 , 26 , 27 , 30 , 31 ], leukemia was more prevalent (28.92%). Most solid tumors were neuroblastomas (9.88%), while the most frequent brain tumor was glioma (6.19%).…”