Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

Røen, Ingebrigt; Stifoss‐Hanssen, Hans; Grande, Gunn; Brenne, Anne-Tove; Kaasa, Stein; Sand, Kari; Knudsen, Anne Kari

doi:10.1177/0269216318777656

Cited by 47 publications

(80 citation statements)

References 33 publications

(72 reference statements)

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“…In our study, this need for balance was significant, especially when the patient rejected support offered by healthcare providers. Research has showed the importance of a personal relationship between family caregivers and health personal and detailed information about the dying process to handle the challenges (Mohammed at al., ; Røen et al, ).…”

Section: Discussionmentioning

confidence: 98%

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

et al. 2019

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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.

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Section: Discussionmentioning

confidence: 98%

“…Røen et al () have explored factors promoting carer resilience. A personal relation to the healthcare providers was identified as a particularly important resilience factor.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2019

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“…In this study, we followed a broad description of compassion as involving an awareness of, or a sensitivity to, the pain or suffering of others that results in taking verbal, nonverbal or physical action to remove, reduce or alleviate the impact of such affliction (Gilbert, 2013). This description is relevant because research has shown that patients and their family caregivers experience deficiencies in palliative care provision (McEwen et al, 2018; Røen et al, 2018; Tarberg et al, 2019). A Norwegian study found that family caregivers experienced limited involvement, a lack of preparation for the dying phase, and unsystematic follow‐up after death (Tarberg et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Nurses’ experiences of compassionate care in the palliative pathway

Tarberg

Landstad

Hole

et al. 2020

Journal of Clinical Nursing

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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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“…major depression, anxiety, fatigue, sleeplessness or social isolation) [3], while others will not experience the diagnosis as a traumatic event [4]. However, after a short period of disruption, a significant group will probably follow a resilient process, characterised by recovery to a status of healthy functioning, or will even find benefits in caregiving [5][6][7].…”

Section: Introductionmentioning

confidence: 99%

“…Studies on resilience in caregivers of advanced cancer patients are scarce [4,6,7,14], and the information needed to develop a resilience-supporting intervention in primary cancer care is still lacking. Hence, more research in this field is vital.…”

Section: Introductionmentioning

confidence: 99%