Perception of health professionals about neonatal palliative care

ABSTRACT Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.

摘要
研究目的：旨在明确医疗卫生人员对新生儿姑息治疗（neonatal palliative care）的认知与态度。
研究方法：本研究为现象学质性研究，采用非概率抽样方法，纳入葡萄牙北部某新生儿重症监护病房（neonatal intensive care unit）的15名医疗卫生人员作为研究对象，采用内容分析法开展数据分析。
研究结果：尽管医疗卫生人员未接受过姑息治疗相关系统培训，但他们仍十分关注新生儿及其家庭的尊严、生活质量与舒适体验。研究对象坦言，在跟进重症患儿的病程进展与死亡轨迹、以及开展临终相关伦理决策的过程中，会面临情感与人际沟通层面的多重困境。
研究结论：本研究证实，医疗卫生人员对病痛与苦难具备敏锐感知力，在新生儿及其家庭的照护工作中展现出高度的专注与投入。他们愿意接受相关培训，直面组建儿科姑息治疗（pediatric palliative care）团队所带来的各项现实挑战，并助力构建能够推动此类照护事业发展的组织文化。