School of Psychology, Stress and Health Research Group, Autonomous University of Barcelona, Barcelona, Spain.
Palliative Care and Complex Chronic Patient Service (C2P2), Sant Joan de Déu Hospital in Barcelona, Barcelona, Spain.
Eur J Pediatr. 2024 Mar;183(3):1305-1314. doi: 10.1007/s00431-023-05330-4. Epub 2023 Dec 19.
The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6.95, SD = 1.85) than their parents (mean = 5.39, SD = 2.43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3.70; SD = 1.95) and children (mean = 5.60; SD = 1.17) evaluate QoL more negatively.
Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary.
• Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked.
• Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored.
目的：本研究旨在比较患有危及生命和生命有限疾病的儿童自身及其父母对生活质量（QoL）的感知。通过横断面研究，获得了 44 对亲子对的应答，使用基于学生 t 分布和非参数检验的统计分析进行了分析。
结果：儿童对 QoL 的评价更为积极（均值=6.95，标准差=1.85），而父母的评价则较为消极（均值=5.39，标准差=2.43）。即使考虑了社会人口统计学和疾病变量，这种差异仍然存在。症状加重的情况下，父母（均值=3.70，标准差=1.95）和儿童（均值=5.60，标准差=1.17）对 QoL 的评价更为消极。
结论：儿童比父母更乐观。当孩子的 QoL 评分低于父母时，应仔细监测孩子。可以收集孩子和家庭成员的意见，形成“家庭声音”，两者可以互补。
