O sofrimento na criança e no adolescente com doença oncológica em fim de vida

Abstract

Human suffering results from a threat to the person’s relationship with the physical and psychological self, with others, and with a transcendent source of meaning. As a human experience, suffering is only accessible to those who live it, and only from them, can we get the inspiration to find ways of preventing or softening it.

This systematic literature review is aimed at gaining knowledge of the scientific evidence that refers to suffering in children and adolescents with cancer in end-of-life following PI(C) OD methodology. The results of this review suggest that children and adolescents experience high levels of suffering, identified mostly at the physical level and practically unknown in the psychological
and spiritual levels. However, the investigated subject’s voices are always heard through others: parents, doctors, nurses, or other members of the health team, in a direct way, or through the interpretations they used in their transcriptions into clinical records.

The physical dimension of suffering has evolved favourably with the control of symptoms and the tendency to include earlier palliative measures, caused by the direction of paediatric palliative care. The World Health Organization and the American Academy of Pediatrics, as well as many other international, national and local initiatives stand out here.

The absence of empirical work using children and adolescents as direct access to the actual experience of suffering is an important gap, which it is critical to fill.