“Evaluating Quality of Life in Pediatric Palliative Care: A Cross-Sectional Analysis of Children’s and Parents’ Perspectives”.

Abstract

Abstract 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. Purpose: 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. Methods: 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. Results: 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. Conclusions: Children have a more optimistic view than their parents When the child is the one who reports a lower QoL score than their parent, we 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.