Evaluating quality of life in pediatric palliative care : a cross-sectional analysis of children's and parents' perspectives
Toro-Pérez, Daniel (Universitat Autònoma de Barcelona)
Limonero García, Joaquim T. (Universitat Autònoma de Barcelona)
Guillén, Montserrat (Universitat de Barcelona. Departament d'Econometria)
Bolancé, Catalina (Universitat de Barcelona. Departament d'Econometria)
Navarro-Vilarrubí, Sergi (Societat Catalana de Pediatria)
Camprodon-Rosanas, Ester (Hospital Sant Joan de Déu (Esplugues de Llobregat, Catalunya))

Data:	2023
Resum:	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. 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, 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. What is Known: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked. What is New: • 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.
Nota:	Altres ajuts: acords transformatius de la UAB
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Quality of life ; Pediatric palliative ; Children ; Parents ; Life-limiting conditions ; Psychological assessment
Publicat a:	European journal of pediatrics, 2023 , ISSN 1432-1076

DOI: 10.1007/s00431-023-05330-4
PMID: 38112799

10 p, 964.4 KB

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