Peer-reviewed article
Navigating existential conversations about life and death with families in paediatric palliative care: a qualitative interview study with healthcare professionals.
Hjorth E, Melin-Johansson C, Holmberg B, Godskesen T, Hagelin CL et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study examines how eight paediatric healthcare professionals in Sweden approach conversations about life, death, and existential issues with children and families facing life-threatening illness. The professionals reported that these conversations are emotionally intense and ethically complex but meaningful, requiring a balance between courage, presence, sensitivity, and professional boundaries. Key factors for effective communication include honesty, age-appropriate language, empathy, cultural sensitivity, and tailored approaches to each family's unique needs. The study highlights that organizational culture, collegial support, supervision, and professional development are essential to enable healthcare workers to engage meaningfully in these difficult conversations.
Key points
- Healthcare professionals experienced existential conversations as emotionally intense, ethically complex, yet meaningful
- A balance between courage, presence, sensitivity, and professional boundaries was identified as crucial
- Honest communication, age-appropriate language, empathy, and cultural sensitivity were emphasized as essential
- Collegial support, supervision, and debriefing strengthen professionals' ability to address existential issues
- Organizational culture and workplace structures significantly influence healthcare professionals' capacity to engage in existential conversations with families
Limitations
This study captures only the perspectives of eight healthcare professionals in Sweden and does not assess outcomes for children and families or compare different communication approaches. The findings may not be generalizable to other countries or healthcare systems with different organizational structures and cultural contexts.
Abstract
Background When a child has a life-threatening illness, guidelines emphasise the importance of providing holistic support to the whole family. Conversations about existential issues are essential in this support, yet staff often lack formal training in communication, particularly when addressing such issues as life and death. This qualitative study explored how paediatric healthcare professionals in Sweden experience and approachconversations about existential issues with children and their families facing life-threatening illness. Methods Eight professionals representing different disciplines and paediatric palliative care settings took part in individual interviews, analysed using an interpretative description approach. Results The results show that healthcare professionals experienced the existential conversations with families as emotionally intense, ethically complex, yet meaningful. A balance between courage, presence, sensitivity, and professional boundaries was crucial, as well as the need for collegial support. The importance of honest communication and age-appropriate ways of talking about illness and death was emphasized. They stressed that communication should be empathetic and culturally sensitive, without ready-made solutions, and based on the unique needs of the family. They also described organizational factors that influenced their ability to engage in existential conversations with the families. Conclusions Maintaining an open approach to existential conversations is essential to how these dialogues are carried out. Such an approach includes creating workplaces with an organizational culture that encourages existential conversations with patients and families. The importance of both personal and professional development is also emphasized, where collegial support and structures that promote professional growth, such as supervision and debriefing, strengthen the ability to address existential issues.