Children’s Experience of Symptoms: Narratives through Words and Images

Abstract

Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment—or both concurrently—our challenge is to enhance their comfort and minimize their distress. Symptom management is thus a critical component of pediatric palliative care. Symptoms may be either physical or psychological in nature (or a confluence of both) and their effective management has a direct impact on the child’s quality of life. This article provides an integrative overview of children’s experience of selected physical and psychological symptoms, as expressed through their words and images. Understanding their perspectives is an essential component in the design and provision of optimal symptom management. Included, as well, are examples from siblings—a reminder of the profound impact of illness on these children who also “live” the experience, albeit in a different way. The symptoms that are described are pain, nausea and vomiting, fatigue, weakness, seizures, hair loss, depression, and anxiety. Although psychological symptoms are often inextricable from the physical, they may also present independently as part of the overall illness experience.

Keywords

• pediatric palliative care
• life-threatening illness
• complex chronic illness
• symptoms
• experience
• psychological
• trauma