Nurses' experiences of end-of-life communication with children who have life-threatening conditions in paediatric intensive care units: a qualitative descriptive study

护士在儿科重症监护病房与生命垂危儿童进行临终沟通的经验:一项定性描述性研究

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Abstract

BACKGROUND: Effective communication is critically important for providing child- and family-centred care. This approach puts children and their parents at the centre of the nursing care and decision-making processes. However, there are limited studies from a cultural perspective from low- and middle-income countries like Türkiye on how nurses approach end-of-life conversations with children. This study aims to explore nurses’ experiences of end-of-life communication with children who have life-threatening conditions in paediatric intensive care units. METHODS: A qualitative descriptive study with data generated by semi-structured interviews were conducted using thematic analysis. The purposive sampling technique was used to gather data from 16 nurses caring for children with life-threatening conditions in paediatric intensive care units between July and October 2024. Ethical approval was obtained from University of Mugla Sitki Kocman Research Ethics Committee [Ref: 230007]. RESULTS: The data analysis developed four themes and 12 subthemes. The main themes were: (1) Avoiding talking about death, (2) Challenging situations unique to the paediatric intensive care unit,3) End-of-life communication facilitators, and 4) How best to support nurses in improving their end-of-life communication skills. Nurses experienced difficulties in how to answer children’s questions during end-of-life care, and sometimes they told partial truths or changing the subject. The study also revealed end-of-life communication facilitators such as compassion, knowing children’s interests and age-appropriate communication. Challenging experiences were identified as talking about death, child-witnessed resuscitation, struggling between compassion and hospital visiting policies and, non-adherence to treatment in children. In addition, participants reported the need for end-of-life communication skills training and support from psychiatric consultation liaison nurses to overcome challenging situations. CONCLUSIONS: Nurses in paediatric intensive care units have significant difficulties in communicating effectively with children who have life-threatening conditions and need support to enhance their end-of-life communication skills with children. To contribute higher quality child and family centred care and facilitate end-of-life communication with children who have life-threatening conditions, the development of culturally sensitive end-of-life communication guidelines/tools/policies for paediatric intensive care units need to be prioritised and effective support measures should be implemented for these nurses. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-026-02007-1.

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