Background The burdensome life of haemodialysis impacts both patients and their families. It often leads to a stressful life marked by experiences of loss and grief. Nurses report a lack of knowledge and skills in providing grief support, as well as insufficient time for existential conversations with patients and families.

Objectives To explore the experiences of loss, grief and support needs of both adults on haemodialysis with no option of a kidney transplant and their family members.

Design A qualitative explorative study, using a phenomenological-hermeneutical approach and semi-structured interviews. Ricoeur's interpretation theory was used to analyze data involving three steps: Naïve reading, structural analysis and critical interpretation and discussion.

Participants Nine adults on haemodialysis and eight family members.

Findings Haemodialysis treatment alters everyday life for families resulting in experiences of anticipatory grief. Both adults on haemodialysis and their family members experienced challenges with identities and changes in social relationships over the course of the illness with psychological consequences for the family. A holistic family-focused grief support was identified as an important need for the participants and ought to include time and room for private existential conversations with nurses.

Conclusion This study offers unique insights into the impact of loss and anticipatory grief in everyday life for those on haemodialysis and their families. Greater existential support and holistic family-focused grief support is proposed to guide family nursing in kidney care. Healthcare policies and health education in grief ought to reflect the care needs of both patients and family members.