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 (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.