School-Age Children's Characterization of Symptoms and Symptom Management: A Thematic Analysis

BackgroundUnderstanding how children perceive and communicate their symptoms and their preferences for symptom management can support person-centered symptom assessment and management. The purpose of this study was to describe how school-age children, those between 6 and 12 years of age, with cancer characterize symptoms and symptom management.MethodThis study involved a secondary analysis of qualitative data collected during the content validity phase of an instrument development study. Participants were 21 school-age children (6-12 years of age; median 11 years; 11 boys) who participated in audio-recorded cognitive interviews. Interviews lasted a median of 14.2 min (range 6.95-22.03). Transcripts were analyzed using Dedoose. An inductive, thematic analysis was used to identify repeated patterns of meaning within the data.ResultsThemes included (a) children's definitions of symptoms; (b) actions and behaviors associated with symptom management; and (c) roles and responsibilities of others. Children defined symptoms both as feeling states and specific symptoms that reflected past experiences. Symptom management was characterized as self-initiated actions by children themselves as well as actions initiated by others. Children described parents as having an intermediary role between themselves and the clinical team, relating that those caring for them should "know" how they are feeling and take the initiative to ask.DiscussionUnderstanding children's characterization of symptoms and symptom management can guide child-centered symptom assessment and interventions. Implications include a triadic process of symptom management between the child, parents, and clinical team, wherein children expect the latter two groups to understand the nature of their symptoms and act on their behalf to make them feel better. There was also a desire expressed by the pediatric cancer patients for clinicians to adapt their language to better fit the vernacular of school-aged children to promote better communication and understanding of the nature of symptoms experienced. Limitations include a small sample from a single site. Future directions include developing interventions to enhance pediatric oncology clinicians' symptom assessment skills, including child-centric communication.