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Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals

2023; Cambridge University Press; Volume: 22; Issue: 5 Linguagem: Inglês

10.1017/s1478951523000251

1478-9523

Daniel Toro-Pérez, Ester Camprodon‐Rosanas, Sergi Navarro Vilarrubí, Catalina Bolancé, Montserrat Guillén, Joaquín T. Limonero,

Family and Patient Care in Intensive Care Units

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0-10 visual analog scale. For each child, a health professional also rates the child's emotional status using the same scale.The average child's emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children's emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children's emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.