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

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. 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]. 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. 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.