AimTo explore how family caregivers experience involvement in palliative care.DesignA qualitative design with a narrative approach was used.MethodsPurposive 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.ResultsWe 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.ConclusionThe 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.
Cachexia is a prevalent condition, affecting both patients with localized and metastatic cancer. Clinical attention to the condition is a sizeable unmet need.
Aims and objectives: The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway. Background: Compassion is fundamental to palliative care and viewed as a cornerstone of high-quality care provision. Healthcare authorities emphasize that patients should have the opportunity to stay at home for as long as possible. There are, however, care deficiencies in the palliative pathway. Design: This study employed a qualitative design using focus groups and a hermeneutic approach. Methods: Four focus groups with three to seven female nurses in each group were conducted in Mid-Norway in 2018. Nurses' ages ranged from 28-60 years (mean age = 45 years), and they were recruited through purposive sampling (N = 21). Compassionate care was chosen as the theoretical framework. Reporting followed the COREQ guidelines. Results: Three themes expressing compassionate care related to different phases of the pathway were identified: (a) information and dialogue, (b) creating a space for dying and (c) family caregivers' acceptance of death. Conclusions: This study showed that it was crucial to create a space for dying, characterized by trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and the absence of noise and conflict. Relevance to clinical practice: The quality of compassion possessed by individual practitioners, as well as the overall design of the healthcare system, must be considered when creating compassionate care for patients and their family caregivers. Nursing educators and health authorities should pay attention to the development of compassion in education and practice. Further research should highlight patients' and family caregivers' experiences of compassionate care and determine how healthcare systems can support compassionate care. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
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