Families' experience of anticipatory grief in home-based palliative cancer care and their support needs: A qualitative study

Abstract

Purpose

The aim of this study was to investigate how families of patients with cancer in palliative care experience anticipatory grief and their expressed support needs in relation to loss and grief.

Method

The study applied a qualitative hermeneutic-phenomenology framework. Qualitative data were obtained through semi-structured family interviews with five families living in a municipality in Denmark. The interviews were audiotaped, transcribed and analyzed using a thematical analytical approach.

Results

Three major themes were identified (1) anticipatory grief constantly present in everyday life. Anticipatory grief occurred when families watched the illness progress, and they experienced physical, cognitive and relational losses both with the patient and within family. (2) Experience of support from both family and professionals. (3) Families change perception when illness is present in daily life. Families experienced loss as a dynamic process oscillating between living their everyday life and feeling the presence of illness.

Conclusion

The study highlighted family's anticipatory grief is not addressed sufficiently in palliative care. Anticipatory grief occurred when families watched the illness progress, and they experienced physical, cognitive and relational losses both with the patient and within the family. Clinical interventions, such as a model for family interventions during anticipatory grief, are required to address different palliative care trajectories and reduce anticipatory grief in families.