ABSTRACT
Brain tumors are a common form of solid tumors in children and, unfortunately, they are characterized by a very uncertain prognosis. The treatment of this pathology often includes one or more very invasive surgical procedures, quite often in the very first steps of the treatment. Cases of brain tumors in children represent one of the greatest challenges for health care professionals in the domain of pediatric neurosurgery. This is clearly due to the complexity of the therapeutic plan, but also to the nature of the bond that is established between the child, the parents, and the members of the staff during the often-dramatic initial phase of the illness. In this phenomenological-hermeneutic study, we explore both the emotional and organizational needs, as well as the available professional and personal resources of the staff in the Neurosurgery ward of the Meyer Children's Hospital in Florence (Italy). The ward staff, composed of 7 surgeons, a pediatric neuro-oncologist, 12 nurses, and 4 auxiliary health care professionals, underwent in-depth interviews that were recorded (with the consensus of the participants). The recordings were then transcribed and submitted to content analysis according to COREQ standards. A complex picture of emotional as well as organizational demands emerged from the data. Shared experiences were pointed out, together with more specific and idiosyncratic contents characteristic of different professional roles. The focus of the present paper was twofold, first, we considered the needs that are overtly expressed by the staff, and then we discussed the main sources of their motivational drives. We found that the latter is mainly found in the quality of the therapeutic bond that is established with the children and the family members, together with the deep interest in one's own professional activity and the effective complementarity and integration of the personal and professional qualities of the staff members within the multidisciplinary caring group.
ABSTRACT
OBJECTIVE: The study was designed to explore the subjective perspective on end-of-life practices in three different groups of pediatric onco-hematologic nurses. METHOD: In 2004-2005 each member of the nursing staff of the Pediatric Onco-Hematology Ward of the University of Padua, Italy, and the Oncology Ward and Home Assistance Module of the Giannetta Gaslini Hospital, Genoa, Italy was interviewed using a semistructured questionnaire with open questions on end-of-life procedures. The results were returned to the interviewees through group meetings. Here, we examine replies given regarding terminal sedation. RESULTS: With regard to the nurses from Padua, common features came together in a consolidated practice. The amount of suffering and physical pain was considered an element in determining the use of sedation: "when there is atrocious suffering." Another aspect was "painful awareness," the difficulty in being able to bear the fact that the child is aware that death is imminent. The nurses from Genoa stated that the procedure was adopted mainly for three reasons: to sedate the pain, to calm the hunger for air, and to control the anguish caused by the realization that death was imminent or unavoidable. It was noted that the nursing staff of the Home Assistance Unit, Genoa found themselves in a privileged position regarding this procedure both because of the strong relationship established among child, parents, and nurse, and because of being able to take shared decisions after in-depth discussion. SIGNIFICANCE OF RESULTS: The results enlighten the critical role of the nursing staff with respect to this procedure, given the involvement with the families and their ability to understand the child's demands and intimate expectations.
