Palliative Care of Babies Suffering from Congenital Malformation: Maternal Feelings and Difficulties
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. Methodology: 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 confrontation of the reality of having a baby suffering from an incurable problem that threatens life.
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.
Authors who publish with this journal agree to the following terms:
- Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
- Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
- Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access and Benefits of Publishing Open Access).