Peer-reviewed article
Being There: Danish Nurses' Lived Experiences of Companionship With Families in Home-Based Paediatric Palliative Care in Regional Settings.
Alm A, Beck M ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explores Danish nurses' experiences of providing home-based palliative care to children and families in regional settings. Through phenomenological interviews with ten nurses, the research identifies how nurses experience companionship with families, emphasizing presence and attentiveness over medical action. The study describes three key aspects of nurses' experiences: walking alongside families, providing care through presence rather than doing, and sensing what matters to families. The findings suggest that effective home-based paediatric palliative care relies on professional experience combined with responsiveness to what each situation requires.
Key points
- Nurses experience home-based paediatric palliative care as 'coming close by walking alongside families' as relationships develop
- Care unfolds through 'letting care arise through presence rather than action' when no further medical intervention is possible
- Nurses develop the ability to 'sense what is at stake' and what is lived but not spoken by families
- Effective care draws on professional experience combined with openness to what each situation calls for
- Regional home-based paediatric palliative care teams in Denmark were established between 2015 and 2016
Limitations
This study captures only the nurses' perspectives through qualitative interviews and does not assess outcomes for children and families, measure the effectiveness of interventions, or explore families' own experiences of the care provided. The findings are specific to Danish regional settings and may not generalise to other contexts.
Abstract
Background Paediatric palliative care (PPC) is a relatively new field in many countries, including Denmark, where regional home-based PPC teams were established between 2015 and 2016. While research on PPC is growing, the lived experiences of nurses providing care in the family home remain underexplored. Understanding how nurses experience this form of care is essential for developing practices that support both families and professionals in this demanding field. Aim This study asks what it is like for nurses to accompany children and families through illness, dying, and bereavement in the context of home-based PPC. Method A qualitative phenomenological-hermeneutical approach informed by Max van Manen guided the study. Ten nurses from the Danish regional PPC teams participated in individual phenomenological interviews. Analysis followed van Manen's holistic, selective, and detailed reflection, allowing meaning to emerge through attentive engagement with the lived experiences expressed in the interviews. Results The analysis brought forward three ways in which the experience showed itself: The experience of coming close by walking alongside families; The experience of letting care arise through presence rather than action; The experience of sensing what is at stake. Conclusions Nurses' accounts show that home-based PPC unfolds through ways of being that move between doing and being present. Their care is shaped by the ability to come close as relationships develop, to remain with families when no further action is possible, and to sense what is lived but not spoken. These forms of attentiveness draw on professional experience as well as an openness to what the situation calls for, supporting families through illness, dying, and the time that follows.