When I entered nursing school in 1970, I had no doubt that I would be a pediatrics nurse. I was my neighborhood's most sought after babysitter and had a great knack for working with children. However, just one week into my pediatric rotation, I was done in. I became overwhelmed with angst witnessing the suffering in the children I cared for at a large academic medical center. I identified with the parents' emotional chaos as they stood by their child's bed feeling isolated and impotent.
Needless to say, my years spent in oncology nursing have primarily focused on adults with cancer. Yet my interest in the field of survivorship has created a bridge to the care of children as they have set the foundation for our research and clinical innovation in this growing field.
I recently read two articles and was struck by some glaring differences that exist between survivorship care for the young and mature -- hence this discourse.
Eilertsen and colleagues addressed the quality of life in children and adolescents who had survived three years following their initial cancer diagnosis. These children were compared with healthy controls, and parents of the children with a history of cancer were also studied. I reflected on this paradigm of inclusion that within pediatric survivorship care, there appears to be a consistent attempt to understand how the entire family is affected by the child's malignancy. There is also what I would call, purposeful holism, that social, physical, and psychological domains of long-term sequelae are examined in the pediatric survivor.
Buchbinder's group studied the emotional status of siblings who reach adulthood in tandem with their brother or sister's long-term cancer survivorship. Interestingly, the domino effect was evidenced. Survivor difficulties portended sibling distress. Siblings of sarcoma patients were singled out for having more issues with somatization. The long-term family strain and evidence of visible reminders of the cancer were identified as possible causative factors.
In the adult realm of adult survivorship care, we need to integrate this model of family survivorship with greater rigor. Health impairment, psychosocial distress, and barriers to recovery for the entire family unit should be our investigative norm. In the pediatric world, it is my opinion that we would rarely investigate the child in the absence of knowing something about the parent's lived experience. Within the adult world, this should also be the case. No cancer patient, regardless of age, evolves through their experience alone in a vacuum. There is a wife, a neighbor, grandchildren, co-workers, and adult siblings. This inclusionary approach to future survivorship research is warranted for the adult cancer majority.
- Eilertsen M.E., Jozefiak T., Rannestad T., Indredavik M.S. & Vik T. (2012). Quality of life and adolescents surviving cancer. European Journal of Oncology Nursing, 16, 185-193.
- Buchbinder D., Sasillas J., Krull K.R., Goodman P. & Leisenring W. (2010). Psychological outcomes of siblings of cancer survivors: A report from the Childhood Cancer Survivor Study. Psycho-Oncology, 20, 1259-1268.