Distress among Adolescents with Cancer

Abstract: The primary aim was to investigate the distress perceived by adolescents with cancer treated in paediatric oncology. In Study I, especially distressing events for children/adolescents with cancer were identified by interviews with children/adolescents/parents and nurses. Data were analysed with content analysis. A range of physical and emotional concerns was identified. Physical concerns are of a rather similar nature across age groups. Emotional concerns vary more between age groups. For children 8-12 years, emotional concerns are rather frequent. In Study II distressing and positive aspects related to some care situations for adolescents with cancer were identified by interviews with adolescents and nurses. Data were analysed with content analysis. A range of negative aspects, e.g. fear of alienation, fear of dying, altered appearance and physical concerns, as well as positive aspects, e.g. positive relations to staff and being well cared for were identified.The aspects of distress identified in Studies I and II formed the basis for a structured interview-guide, used in Studies III and IV. Adolescents, recently diagnosed with cancer, physicians and nurses were interviewed by telephone about distress, anxiety, depression and well-being experienced by the adolescents. Adolescent ratings of prevalence, levels and worst aspects of distress do not necessarily agree, however, worry missing school and mucositis are among those rated with the highest prevalence, levels and those perceived as the overall worst. The findings from Study IV demonstrate that physicians and nurses underestimate the distress caused by worry missing school and mucositis. The accuracy of physician and nurse ratings of physical distress is acceptable, however, this is not the case for psychosocial distress. It can be concluded that it is crucial to consider how questions are asked when interpreting the significance of the answers, and that action on adolescent problems in relation to cancer diagnosis and treatment need to rely on direct communication.