Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals.

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 (-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).

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.