Communication with children and adolescents about the diagnosis of their own life-threatening condition

Communicating a terminal prognosis is challenging for patients, families and healthcare professionals. However, positive effects have been reported when children are told about their diagnosis and prognosis, including fewer symptoms of anxiety and depression and addition, they were less likely to have died in specialised inpatient palliative care (OR 0.10, 95% CI 0.02-0.54, P < .01). Dying at home and records that care had been changed from curative to palliative were significant in the bivariate regression, but not in the logistic regression model with other variables. Children who were categorised as having other diseases, and who did not receive end-of-life communication with physicians, died because of aplastic anaemia, cerebral haemorrhage, suicide, trauma and multiple illnesses.We did not expect to find that the 11 children who died in a specialised inpatient palliative care unit had lower odds of receiving end-of-life communication. However, six of them had neurological disorders which sometimes can be associated with communication challenges (five had cancer diagnoses). All their parents received end-of-life communication.A regression model of factors associated with parents could not be conducted as most of them received end-of-life communication (Table 1).In conclusion, less than half of Swedish children aged 4-17 who died in 2015-2017 had end-of-life discussions with a physician and this indicates a need for improved communication with patients when a cure is no longer possible. Although we cannot be certain that these discussions were not conducted, and just not registered, several barriers to communication have been reported by healthcare professionals. These include lack of communication skills and training, little time to prepare for discussions, feeling that patients or parents were not ready for discussions and unrealistic parental expectations. 1 Our study also suggests that detailed reports about children's deaths to the Register must increase to provide a valid picture of the situation in Sweden. This is an important way of improving the quality of paediatric palliative care, as end-of-life communication is one indicator of good quality care. 4 The reason that perinatal conditions were particularly poorly reported to the Register is unknown. However, the professionals involved may have focused on saving lives, as neonatology shares the rescue culture as intensive care. 5 Early integration of paediatric palliative care may be one way to improve both the implementation of end-of-life communication and increased reporting to the Register. This would enable physicians to gradually increase the emphasis on palliative care during discussions with the family.

Background : Audiovisual materials for children have been widely used for cancer education; however, the effects of the materials remain unclear. The purpose of this study was to clarify the effects of audiovisual educational interventions for children.Methods : We searched PubMed, EMBASE, CENTRAL, PsycINFO, and CINAHL on 3 September 2018. Randomized controlled trials and quasi-randomized controlled trials that evaluated the audiovisual materials for children with cancer were included to identify the effects of the audiovisual interventions. The results of the analysis were evaluated using the Grade of Recommendation, Assessment, Development and Evaluation to assess the certainty of evidence.Results: From the identified 5,367 studies, we included four reports based on two trials that included 388 children under 18 years old. One trial found that audiovisual educational intervention increased knowledge and self-efficacy (very low certainty of the evidence). The other trial reported that there were no clear differences in perceived stress and health locus of control (very low certainty of the evidence). The result of the meta-analysis indicated that there was no clear difference between the intervention group and the control group for the quality of life (very low certainty of the evidence).Conclusion: Audiovisual interventions might increase knowledge and self-efficacy, but there were no meaningful overall conclusions. Further trials are needed to assess educational interventions used in pediatric cancer treatment. Healthcare professionals should consider whether the materials they are currently using to communicate cancer-related information are sufficient and understandable for children with cancer.Systematic review registration: We registered the protocol to the PROSPERO (Registration: CRD42018110562)

Background To tell children that they are diagnosed with cancer is challenging for any healthcare professional and family. Pictures books are one of the communication tools for talking with children about severe diseases. However, little research is available about the contents and appropriateness of picture books about cancer for children. Methods This study aimed to examine the contents of children's picture books about cancer and explore the advantages and disadvantages of using picture books to communicate with children about cancer. We searched the picture books about cancer written for children aged under ten years old on the Amazon.com Web site on 5 July 2019 and hand-searched on the cancer-related institutes' Web site. We extracted the texts of relevant picture books and conducted a contents analysis of them. Two researchers independently coded the patterns and contents and calculated the agreement between the codings of two researchers using Cohen's kappa coefficient. Results We identified 2,555 picture books and included 30 of them. We identified three main contents, (a) cancer-related knowledge, (b) impacts of cancer, and (c) dealing with cancer. Cancer-related knowledge refers to the information about what is going on and what children have to do. Impacts of cancer refer to the impact of having a child with cancer. Dealing with cancer relates to the actions to reduce or minimize stressful events that had been described. These contents were written with simple words and illustrations. Some of them included the essential contents, which might be misunderstood by children. Conclusions Picture books use plain language with illustrations and might be helpful for children to understand about cancer. However, as these books do not include all contents, it is necessary to select and use multiple books depending on the content which is wanted to tell the child. Moreover, there was no picture book which was developed based on children's information needs and validated. Further research should evaluate the impacts of these books as a communication tool when talking with children diagnosed with cancer.