Symptom experiences of children and adolescents with cancer

Abstract

This paper examines nursing research focused on the symptom experiences of children and adolescents with cancer, and the extent to which the perspective and methods of developmental science have been used in this research. CINALH, MEDLINE, and PSYCHLIT were searched for publications between 1990 and 2002. The researcher or research team had to include a nurse or developmentally oriented researchers from other disciplines. Studies focused exclusively on pain were excluded because of recent published reviews. While nurse researchers have contributed influential knowledge related to symptom experiences and symptom distress in children and adolescents with cancer, this research is still in a formative but exciting stage. Two nurse researchers and their teams laid the foundation for this research through their individual studies and collaborative multisite studies. In general, children and adolescents from 10 through 18 years of age were primarily studied; few studies focused on preschool children. Given the fact that these are rare populations, sample sizes were generally small, limiting power and generalizability. Gender, ethnicity, and socioeconomic status were rarely considered in analyses. Most studies used cross-sectional designs, although several included short-term longitudinal or repeated measure designs. To date, longitudinal designs focused on long-term outcomes have not been conducted. There were only a few qualitative studies. There was limited use of conceptual models or theories, and inadequate attention was paid to broader ecological perspectives in the children's lives. Studies included a focus on global symptoms and on individual symptoms, particularly pain and fatigue. Few focused on nausea and vomiting. Operationalization of symptom distress generally involved adapting instruments designed for adults. A more explicit employment of a developmental science perspective in future studies would call for more longitudinal designs that conceptualize the symptom experience from the perspective of the child and that view their responses as complex and multidimensional in nature. This would necessitate measuring clusters of symptoms at multiple levels (e.g., emotional, behavioral, and biophysiological) using developmental data collection methods. Furthermore, attention needs to be paid in conceptualizing studies to ecological factors related to families, social networks, communities, and ethnicity, as well as to the ecology of the health care system, which likely influences the symptom experience of children.