Toro-Pérez Daniel, Camprodon-Rosanas Ester, Navarro Vilarrubí Sergi, Bolancé Catalina, Guillen Montserrat, Limonero Joaquín T
School of Psychology, Stress and Health Research Group, Autonomous University of Barcelona, Barcelona, Spain.
Children and Adolescent Mental Health Research Group, Department of Child and Adolescent Psychiatry and Psychology, Sant Joan de Déu Hospital, Barcelona, Spain.
Palliat Support Care. 2024 Oct;22(5):1000-1008. doi: 10.1017/S1478951523000251.
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 (-test = 4.6, -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 (-test = 2.2, -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.
我们的研究旨在比较儿科姑息治疗环境中儿童对自身情绪健康的认知、或父母所表达的认知，与参与其护理的专业人员的认知。
在这项横断面研究中，对30名平均年龄为10.8岁（标准差[SD]=6.1）的儿童的情绪健康状况进行评估。儿童或必要时的父母，通过在0至10的视觉模拟量表上回答一个关于情绪健康的问题来评估他们的状况。对于每个儿童，一名健康专业人员也使用相同的量表对该儿童的情绪状态进行评分。
儿童或父母给出的儿童情绪健康平均得分为7.1（SD=1.6），而健康专业人员给出的平均得分为5.6（SD=1.2）。儿童或父母对儿童情绪健康的评分显著高于专业人员（t检验=4.6，P值<0.001）。当疾病状态为进展期时，健康专业人员对儿童情绪健康的评分显著低于疾病非进展期时（t检验=2.2，P值=0.037）。
儿童自身或其父母对情绪健康的评价比健康专业人员更积极。社会人口统计学和疾病变量似乎对这种认知没有直接影响，更有可能的是儿童、父母和专业人员关注的是不同方面，并且儿童或父母需要保持更乐观的看法。我们必须强调，当这种差异更为明显时，可能是一个警示信号，表明需要对这种情况进行进一步分析。
