55: Pediatric Oncology Social Work: An Interview with Barbara Jones, Ph.D., MSW

Episode 55: Today's podcast is about social work with children who have cancer, also referred to as pediatric oncology social work. Although pediatric cancer is relatively rare event, making up less than 1% of the cases diagnosed annually, that single case affects the lives of countless others. From a treatment perspective, when a child is diagnosed with cancer, the whole family is diagnosed with cancer. Children are most likely to get cancer in their first year of life, and least likely between the ages of 5 and 14. If you are white kid in the United States you are nearly two times more likely to get cancer than if you are black. One in 300 boys and one in 330 girls will develop cancer before the age of 20. Every year 2500 children die from cancers with names like Acute Lymphoblastic Lukemia (cancer of the bone marrow - the most common childhood cancer), Hepatoblastoma (cancer of the kidney), neuroblastoma (cancer of the central nervous system), Ewings sarcoma (bone cancer), Hodgin’s Lymphoma (cancer of the lymph nodes), and Wilms tumor (cancer of the kidney). Notice that the most common forms of adult cancer such as lung, breast and colon are not included on this list. And it is not just that children get some cancers and adults get others. Among children, the cancers most often found in infants and toddlers are not the same as the cancers most often found in teenagers. For children today, getting a diagnosis of cancer is not the death sentence it once was. Before 1970 most children who got cancer died. Today, survival rates are nearly 80%. Currently there are about 270,000 survivors of childhood cancer. Consequently pediatric oncology social workers need to know as much about working with survivors of cancer as they do about issues of death and dying. To help me get a better idea of what being a pediatric oncology entails, I spoke with Dr. Barbara Jones, social worker and faculty member at the school of social work at the University of Texas at Austin. Dr. Jones is the immediate past president of the Association of Pediatric Oncology Social Workers, on the editorial board for the Journal of Social Work in End-of-Life and Palliative Care , and the co-director of the Institute for Grief, Loss and Family Survival at UT-Austin. Dr. Jones recently designed and taught the first social work course in the United States on psychosocial oncology. In today's podcast, Barbara and I talked about the role of a pediatric oncology social worker in a multidisciplinary team, with the child, with the family, in a hospital setting and in the community. We talked about best practices for working with kids with cancer and the role of research in pediatric oncology social work. She talked about practical and ethical issues in pediatric oncology social work such as consent and assent, how to accurately assess a child's pain, and how social workers can take care of themselves. Barbara told some powerful and moving stories about the work she's done with children who have died and children who have survived cancer. We ended our conversation with a discussion about how social workers get training in pediatric oncology social work, and what some resources are for social workers who would like to know more about working with children with cancer. One quick word about today's podcast: I recorded today's podcast using a Zoom H2 recorder on location at the Society for Social Work Research annual conference. If you listen closely you can hear the sounds of San Francisco in the background: a clock chiming, busses loading and unloading passengers, and even some pigeons congregating outside of the interview room. They don’t detract from the interview, but I wanted to give fair warning in case you were listening to this podcast anywhere were those sounds might be cause for alarm.