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Parents' and Physicians' Perceptions of Children's Participation in Decision-making in Paediatric Oncology: A
Michael Rost1, Tenzin Wangmo2, Felix Niggli3
1Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland. michael.rost@unibas.ch.
Insights
Parents and physicians often disagree on information sharing in pediatric oncology shared decision-making. Physicians should improve communication to align perceptions and enhance child involvement, especially for older girls.
Area of Science:
- Pediatric Oncology
- Shared Decision-Making
- Healthcare Communication
Background:
- Shared decision-making (SDM) is crucial in pediatric oncology, involving complex treatment choices.
- Understanding differing perspectives between parents and physicians is key to optimizing SDM.
- Previous research highlights potential communication gaps in pediatric healthcare settings.
Purpose of the Study:
- To investigate shared decision-making (SDM) in pediatric oncology from both parent and physician viewpoints.
- To compare parent and physician perceptions regarding information provision and child involvement in decision-making.
- To identify factors influencing a child's actual involvement in SDM.
Main Methods:
- Prospective study conducted across eight Swiss Pediatric Oncology Group centers.
- Survey data collected from parents and physicians of pediatric patients (<18 years).
- Statistical analysis comparing parent and physician perspectives and evaluating factors of child involvement.
Main Results:
- Significant differences observed in perceptions of information provision between parents and physicians.
- Parents perceived children as more competent, assessed disease severity as worse, and reported higher satisfaction with child involvement.
- Patient age and gender were significant predictors of involvement, with older children and girls more involved; parents desired a more active role than they experienced.
Conclusions:
- Physicians need to ensure accurate understanding of information provided to pediatric patients and parents.
- Awareness of systematic differences in perception between parents and physicians regarding the child, disease, and SDM is essential.
- Interventions should aim to bridge these perceptual gaps to enhance effective shared decision-making in pediatric oncology.
Abstract:
The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians' and parents' perspectives and by evaluating factors associated with children's actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision examined, parents' and physicians' perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient's age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making.
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