The dynamic of the supply of pediatric palliative care: a multiple case study

The objective was to analyze the dynamic involving the supply of palliative care for eligible children from the perspective of health professionals and families. A qualitative exploratory multiple case study was performed. This was a cross-section of data from a thesis that evaluated care for hospitalized children who were eligible for palliative care. The data were collected in a teaching hospital serving as the reference for high-complexity care in São Luís, Maranhão State, Brazil, from October 2016 to July 2017, interpreted with thematic analysis. The participants were 18 family members and 30 health professionals. Cases were nine children from one to eight years of age, five of whom were eligible for exclusive care and four for integrated care. Three categories emerged from the interviews: (1) a mistaken understanding of the concept of palliative care; (2) delivering the news; and (3) comprehensiveness and fragmentation in the context of palliative care. The mistaken understanding of pediatric palliative care interfered in the approach to the child and family and delayed the start of care. Feelings of insecurity, fear, resistance, and guilt were present among those involved in this care. The communication process and relations displayed weaknesses. The care involved both comprehensiveness and fragmentation. The care shows weaknesses and lack of knowledge and requires investments in training and preparing the health professionals, shared decisions, and receptiveness to the families. Palliative care mobilizes life-and-death cultural and religious values, and education in this direction proves to be a path full of challenges.

Keywords:  Palliative Care; Child; Child Care