Cross-sectional study of the perceived wellbeing of children in palliative care

Abstract

Objective

To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs).

Methods

We conducted a cross-sectional study in young people aged 8 years or older with collection of data on demographic and disease-related variables from the health records. In the psychological evaluation, we collected data on emotion regulation, cognitive strategies and risk of depression and anxiety, in addition to the assessment of the pWB through a visual analogue scale. We calculated means and standard deviations and assessed differences in means using the t test. We fitted multiple linear regression models for pWB as a function of sociodemographic, disease-related and psychological variables.

Results

The sample consisted of 60 children and adolescents with a mean age of 16.0 (SD, 4.2; range, 9–24), 33.3% female, and with a mean pWB score of 7.0 (SD, 1.8). Forty five percent had emotional symptoms; 46.7% problems with peers, 33.3% behavioural problems, 22% risk of depression, 30% risk of anxiety and 18.3% emotion regulation difficulties. The regression model showed that age 14 years or greater (P = .03), exacerbated symptoms (P = .01), the risk of depression (P = .01) and the use of the rumination and catastrophizing cognitive strategies (P < .01) had a negative impact on pWB.

Conclusions

Young people with LLTCs have problems with peers, emotional symptoms and anxious-depressive symptoms. Poorer pWB scores were associated with age 14 years or older, symptom exacerbation, emotional symptoms, depression and the use of rumination and catastrophizing cognitive strategies. Psychological care programmes must respond to these characteristics.