Symptom and Illness Experience for English and Spanish-Speaking Children with Advanced Cancer: Child and Parent Perspective.

Donna S Zhukovsky,Marlene Z Cohen,Rhonda Robert,Robert J Wells,Eduardo Bruera,Cathy L Rozmus

doi:10.3390/children8080657

Abstract

Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child’s developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the symptom and illness experience of English- and Spanish-speaking children with advanced cancer as described by the child and parent. We conducted hermeneutic phenomenological, descriptive, and interpretive interviews with eligible children and parents. The interdisciplinary research team analyzed transcripts hermeneutically until consensus on theme labels was reached. Four themes and associated subthemes were identified from the interviews of the 10 child–parent dyads: 1. symptoms disrupt life (path to diagnosis, life is disrupted), 2. isolation (lack of understanding, family separations/relationships), 3. protection, and 4. death is not for children. Children and parents readily described the impact symptoms and cancer treatment had on their lives and relationships. These findings underscore the salient aspects of daily life disrupted by cancer. With a deeper understanding of symptom burden and its interference, relationship and communication implications, and anticipatory grief, the treating team may better optimize care for children and their families living with advanced cancer.

Highlights

The symptom and illness experience for pediatric patients with advanced cancer is an integral component of comprehensive cancer care
Suffering caused by symptoms such as nausea, vomiting, and fatigue, as well as symptoms limiting activities due to limb or central nervous system dysfunction, is common in children under active treatment or supportive care for advanced cancer
Our findings suggest that for children, evaluation of individual symptoms distinct from accompanying symptoms or by contributing dimensions such as intensity, might be of more limited value than for adults

Summary

Introduction

The symptom and illness experience for pediatric patients with advanced cancer is an integral component of comprehensive cancer care. Suffering caused by symptoms such as nausea, vomiting, and fatigue, as well as symptoms limiting activities due to limb or central nervous system dysfunction, is common in children under active treatment or supportive care for advanced cancer. Concerns about eventual outcome of the cancer and its treatment cause additional suffering for both patients and their families. Communication of these health-related concerns is complicated by the child’s developmental level, physical and psychological health status, current distress level, and patient–caregiver relationships. Most studies evaluating symptoms in children with cancer rely on proxy report; few studies include patient reported outcomes [5,6,7]

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Discussion

Conclusion