Palliative Care of Babies Suffering from Congenital Malformation: Maternal Feelings and Difficulties

Abstract

Objective: To describe the feelings experienced by mothers of babies suffering from congenital malformation in need of palliative care; to identify the difficulties experienced by mothers of babies with congenital malformation in need of palliative care. Methods: It concerns an exploratory research, of a qualitative nature, conducted at the Neonatal Intensive Care Unit and at the Neonatal Intensive Treatment Unit of a reference maternity hospital located in the northeast of Brazil. The data were collected between September and October 2015, through a semi-structured interview, and analyzed through content analysis technique, by means of the following main themes: feelings of mothers of babies with congenital malformation in need of palliative care; difficulties related to a need for care outside the hospital environment. Results: The feelings of sadness, anxiety, insecurity and fear of losing the child were the ones most highlighted by the mothers. The main difficulties reported were those regarding financial aspects due to the necessity of acquiring the essential input to provide the baby with care, and the impossibility to return to their work due to the need of exclusive dedication to the child under palliative care. Conclusion: The necessity of a warm and humanized nursing assistance was highlighted; such assistance can contribute to the positive