Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Purpose: This study explored the needs of children and adolescents with cancer at the end of life from the perspective of the pediatric oncology social worker. The project addressed the following research questions: What are the unique psychosocial needs of children and adolescents with cancer at the end of life? What are the current practice methods of social workers providing end of life care to children in interdisciplinary teams? What would constitute an empirically based best practice model of social work for children with cancer and their families at the end of life? How would this model best be captured in a master's level curriculum for social workers? Knowledge from this study was used to design an empirically based curriculum to teach practice skills to social workers who work in interdisciplinary teams. Methods: One hundred and thirty one pediatric oncology social workers (a 50% response rate) completed a survey which contained seven Likert scales and eleven open-ended questions about the needs of children and families at the end of life and the current and ideal role of social work. Data were analyzed with principal components analysis, paired t-tests and template analysis. Results: Results indicated that children and adolescents with cancer face distinct psychosocial needs at the end of life which are summarized in four categories: pain control and symptom management; companionship, support and counseling; information, control and advocacy over medical decisions; and concrete services. Paired T-tests of child and adolescent needs showed a statistically significant difference at the .05 level of five items that were ranked as more important for adolescents. Those items were: control over treatment decisions, choice of where to die, access to medical information, education about disease progression and structured conversations about end of life. The differences in need perhaps reflect the increasing developmental independence of adolescents (ages 15 -21) as compared to younger children. The ideal role for social workers in providing pediatric end-of-life care clustered around five themes: counselor, companion, guide; advocate, communicator, coordinator of services, ethical consultant, interdisciplinary team member; and resource broker. This presentation will describe how analysis of the data facilitates understanding of children and adolescent's increased control in their own medical decisions at the end of life, the role of social work in facilitating this control and the often overlooked area of pain management for children and adolescents at the end of life. Implications: Pediatric oncology social workers are a critical part of interdisciplinary teams in the hospital. The findings from this study provide recommendations for practice: broadening the definition of counseling in the hospital to include a focus on companioning at the end of life, increasing the social work role in pain and symptom management, advocating for pediatric control and information in medical decisions, increasing the social work role in medical bioethics, and highlighting interdisciplinary teamwork and communication to facilitate optimal end of life care for children and adolescents.