Being There: Danish Nurses' Lived Experiences of Companionship With Families in Home-Based Paediatric Palliative Care in Regional Settings

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.