The 2002 Schering Lecture. Children's cancer symptom experiences: keeping the spirit alive in children and their families.

Abstract

Despite the finding that each child and family experienced cancer in their own unique way, they all shared the need to maintain a sense of spirit. Just as the suffering united the families, so too did their sense of spirit. Talk of the spirit is not foreign in the pediatric oncology literature. Statements such as "the children's responses suggest a resolute spirit that accepts cancer and goes on with life" (Hockenberry-Eaton & Minick, 1994, p.1030) are dispersed throughout the literature and reinforce the importance of the spirit in children and families experiencing childhood cancer. Yet despite this, the spirit in children with cancer has received minimal attention from researchers (Woodgate, 2001). The focus has been solely directed at studying the sense of self in children. In fact, some would even argue that the spirit can be equated with one's sense of self. There is also the feeling that the spirit is something that does not exist. How could it be "real" when it has never been seen or even measured in research? However, just because something cannot be seen or measured, does not mean that it does not exist. As was revealed by the families participating in my study, there was a spirit within them that got them through the cancer experience, especially during times of increased symptom distress. Research that seeks to describe the "spirit within" of children and families who are going through many of life's challenges is warranted. This includes understanding the conceptualization of the spirit from the perspectives of children experiencing illness. Although understanding spirituality and spiritual distress is beginning to be studied in children experiencing illness (Pehler, 1997), children's perspectives are usually not accessed. By developing a deeper understanding of the "spirit within," oncology nurses and other professionals caring for children with cancer may be able to provide more sensitive and comprehensive care. They will have a better understanding to nursing the spirit. So to conclude, let us as oncology nurses continue to help families maintain their sense of spirit. And yes, let us maintain a sense of spirit within ourselves. We could learn from the families we care for with respect to how to nurture our spirits and the spirits of those close to us. Taking care, holding on to the belief, taking one day at a time, and so on, are all strategies that we could learn to incorporate more frequently into our daily lives. May a part of the spirits of those we care for be with us and live on in us forever, because their lingering spirits are sources of hope and strength, as this mother reinforced.