Silent voices: Family caregivers' narratives of involvement in palliative care

Abstract

Aim To explore how family caregivers experience involvement in palliative care. Design A qualitative design with a narrative approach was used. Methods Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017. Results We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. Conclusion The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.