Palliative care for children - problems and attitudes of nurses and midwives

BACKGROUND: The palliative care model is focused on quality of life, and within this model, curative and comfort-enhancing interventions may exist. Advances in medical technology are saving the lives of very low birth weight newborns and critically ill babies in neonatal intensive care units. Babies born with life-limiting conditions or who develop life-limiting conditions during hospitalization may receive palliative care. Bulgaria still lacks an established medical standard for palliative care. Palliative care for children in a terminal condition is provided in a medical facility for hospital care, in a center for complex services for children with disabilities and chronic diseases, as well as in the child's home. The aim of this research project is to ascertain the attitudes and problems in providing palliative care for children. METHODS: A qualitative focus group study involving two focus groups: one of nurses (8) and one of midwives (4) were conducted in March 2023. Nurses are working in children's medical and social care unit, midwives are from neonatal intensive care unit. The data were transcribed and coded using data analysis programe NVivo 12. RESULTS: At this moment we have first preliminary results for problems and attitudes. Through qualitative analysis five common themes were identified: Parents find it difficult to accept the truth and often end the relationship with the child after his placement in a social or medical facility; staff is insufficient; lack of regulation; no specialized training in palliative care; need for specialized pediatric hospices. CONCLUSIONS: Adaptation of the regulatory framework to European and world standards alone is not enough. Children in need of palliative care are of different ages and different illnesses. The lack of sufficiently qualified personnel limits the possibilities of providing quality care. KEY MESSAGES: • The implementation of quality palliative care for children with various problems can only be done by sufficient and well-prepared personnel. • Nurses and midwives admit that their training in palliative care is insufficient.