Naming the silences: A hermeneutic phenomenology of the dimensions of parental decision-making in pediatric oncology

Abstract

The purpose of this study was to explore the experiences of parents as they made decisions when their child with cancer had a recurrence of the disease. The lived experiences of parents whose child's cancer had returned in the last six months was the source of text to uncover the meaning of decision making at this time in their lives. The meaning of decision making is embedded in the wholeness of the parents' journey through childhood cancer. The research methodology was interpretive. Nine parents were interviewed retrospectively on their experiences at the time of the recurrence. Using a reflective phenomenological process and hermeneutic analysis the uniqueness and commonalities of each parent's experience were disclosed. An overarching theme of Listen to Who I Am was brought forth. Two other significant themes of A Community that Cares and What do we do Next were also uncovered. Parents move through a maze of recurrence supported by family and friends. They search for health care professionals within whom to place their deep trust in the curative power of medicine. They desire a homelike atmosphere of loving care for themselves and their child. At recurrence they ask that they be listened to for who they are. They desire that the uniqueness of their being be recognized. In order not to lose their child they ask that treatment continue in order to save their child from death. In order to be comfortable with their decisions they require knowledge of all that is happening and planned for the treatment of their child. Implications for practice, research, and education are intended to enhance the moral community surrounding the child with cancer. More knowledge of parents' experiences at this tragic time is needed. Open dialogue, a naming of the silences between physician, nurse, and parents, will enhance parents' trust and create an atmosphere that will allow for the growth of the "home away from home" for all involved in the care of the child with cancer.