Silent voices: Family caregivers' narratives of involvement in palliative care. Issue 4 (10th August 2019)

• Record Type: Journal Article
• Authors: Tarberg, Anett Skorpen; Kvangarsnes, Marit; Hole, Torstein; Thronæs, Morten; Madssen, Torfinn Støve; Landstad, Bodil J.
• Is Part Of: Nursing open. Volume 6:Issue 4(2019)
• Page Start: 1446
• Page End: 1454
• Publication Date: 2019-08-10
• Subjects: cancer -- caregivers -- decision‐making -- narratives -- nurses -- nursing -- palliative care -- primary health care; 610.73
• DOI: 10.1002/nop2.344
• Languages: English
• ISSNs: 2054-1058

Abstract

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.