An exploratory qualitative study on factors influencing the level of agreement in symptom reports in child-caregiver dyads

Objectives Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children's and caregivers' symptom reports. Factors influencing the level of agreement is an understudied area. Thus, this study aimed to examine potential factors contributing to the level of agreement between symptom reports provided by children and their caregivers.Methods Sixteen child-caregiver dyads participated separately in semi-structured interviews after completing a brief symptom measure independently using an electronic device. Child and caregiver quantitative symptom responses were reviewed in real-time and incorporated into the semi-structured interview. Sample characteristics and the level of agreement between symptom reports were calculated using descriptive statistics. Transcribed participant interviews were analyzed using content analysis.Results Nearly half of child-caregiver dyads exhibited a moderate (37.5%, n = 6) or low (18.75%, n = 3) level of agreement on the abbreviated symptom measure. Qualitative analysis identified 5 themes: recognizing symptoms, experiencing symptoms, communicating symptoms, re-assessing and treating symptoms, and influencing individual and relationship factors. Influencing individual, including a child's tendencies or personality traits, and relationship factors intersected the other themes, partially explained their symptom perceptions, and served to facilitate or hinder symptom communication.Significance of Results Symptom communication is an important part of the symptom cycle, comprised of symptom recognition, experience, and management. Individual and relational factors may influence discrepancies in symptom perceptions between the child and caregiver. Clinicians and researchers should consider developing interventions to enhance symptom communication and promote collaboration between children and their caregivers to address symptom suffering during cancer treatment.