The experience of the family and the professionals with regard to the end-of-life care of a seriously ill child: nursing in the prevention of complicate grief

• Grant number: 14/19361-6
• Support Opportunities: Scholarships abroad - Research
• Effective date (Start): February 17, 2015
• Effective date (End): July 16, 2015
• Field of knowledge: Health Sciences - Nursing - Pediatric Nursing
• Principal Investigator: Regina Szylit
• Grantee: Regina Szylit
• Host Investigator: Pamela S. Hinds
• Host Institution: Escola de Enfermagem (EE). Universidade de São Paulo (USP). São Paulo , SP, Brazil
• Research place: Children's Research Institute (CRI), United States

Abstract

Although witnessing death is part of life, when we are faced with it is always a bitter reminder of our own mortality and impotence, on the one hand, and the harsh reality of being separated from that person and learning to live in a world without them, on the other. The impact of the process of a child's death on the family and the difficulties they and professionals face with regard to end of life situations are also little explored due to the difficulty of carrying out research in this area in Brazil. The defining factors for grief that could be relate to the circumstances of the death, which may be violent, random, involving mutilation, following a period of illness, involving children, or may be a sudden or traumatic death, and the social support received, which includes the health professionals involved. The existence of secrets about the cause of death or the circumstances surrounding it and a lack of information regarding the diagnosis and prognosis are indicated as risk factors for a complicated period of mourning. The overall objective of this study with its qualitative approach, undertaken in a partnership with Professor Pamela Hinds from the Children's National Medical Center, is to understand the experience of the parents of the gravely ill child and of the health professionals with regard to the care given in the end-of-life situation. The study comprises three sub-projects: (1) The relationship of the professionals and the parents of seriously ill children in hospital with regard to end-of-life care; (2) The experience of the grieving parents with regard to the care received at the end of the life of the seriously ill child in hospital; and (3) getting to know these experiences in order to rethink practices with the family and with the child who is at the end of their life: intervention research. To obtain an understanding of the experience as a dynamic process, having as a focus its ramifications over time and the daily relationships, the study will have the case study as a methodological option. The study's participants will be the parents who are experiencing and/or who have experienced the hospitalization of a seriously ill child for whom there is no possible cure and the professionals who are responsible for caring for the child whose parents have been interviewed: the doctors, nurses, occupational therapists and psychologists involved. The data will be collected by analyzing medical records, through observation, interviews and by way of a focus group. The project is already underway in a pediatric cancer hospital in São Paulo. The results point to the moral suffering experienced by the health professionals when they are faced with the difficult task of relating to the family in this context. On the other hand, for the parents the existence of secrets or any misinformation relating to the death of the child can be filled with fantasies that are more painful than the reality, which makes it difficult to attribute meaning to the death of the child. (AU)