Assessing well-being in pediatric palliative care : A pilot study about views of children, parents and health professionals
Toro-Pérez, Daniel ![Identificador ORCID](/img/uab/orcid.ico)
(Universitat Autònoma de Barcelona)
Camprodon-Rosanas, Ester ![Identificador ORCID](/img/uab/orcid.ico)
(Hospital Sant Joan de Déu (Barcelona, Catalunya))
Navarro Vilarrubí, Sergi (Hospital Sant Joan de Déu (Barcelona, Catalunya))
Bolancé, Catalina ![Identificador ORCID](/img/uab/orcid.ico)
(Universitat de Barcelona)
Guillen, Montserrat (Universitat de Barcelona)
Limonero García, Joaquim T. (Joaquim Timoteo)
![Identificador ORCID](/img/uab/orcid.ico)
(Universitat Autònoma de Barcelona)
Data: |
2023 |
Resum: |
Objectives 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. Methods 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. Results 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). Significance of results 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. |
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. ![Creative Commons](/img/licenses/by.ico) |
Llengua: |
Anglès |
Document: |
Article ; recerca ; Versió publicada |
Matèria: |
Pediatric palliative care ;
Children ;
Emotional well-being ;
Psychological assessment ;
End-of-life |
Publicat a: |
Palliative and Supportive Care, Vol. 37 Núm. 4 (2023) , ISSN 1478-9523 |
DOI: 10.1017/S1478951523000251
PMID: 36960600
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Registre creat el 2023-09-27, darrera modificació el 2024-03-15