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

Tarberg, Anett Skorpen; Kvangarsnes, Marit; Hole, Torstein; Thronæs, Morten; Madssen, Torfinn Støve; Landstad, Bodil J.

doi:10.1002/nop2.344

Cited by 47 publications

(76 citation statements)

References 42 publications

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“…Nurses were recruited face‐to‐face by contact persons in the municipalities. A question route with open‐ended questions was developed based on the study aim and earlier research (Crawford et al, 2014; Krueger & Casey, 2015; Tarberg et al, 2019). The questions were related to how nurses had experienced compassionate care in different phases of the palliative pathway: namely the first, the second and the third phase.…”

Section: Methodsmentioning

confidence: 99%

“…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%

“…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). An Australian study showed a gap between guidelines and family caregivers’ experiences of emotional and psychological support in palliative care (Aoun et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

“…In addition, we consider compassionate care as an overall design of healthcare organizations (Blomberg et al, 2016; Crawford et al, 2014; Gilbert, 2013; Kanov et al, 2004; Larkin, 2016). We have divided the palliative pathway in three different parts: the first phase is defined as the first days following the diagnosis of an incurable disease, the second phase is the middle part of the incurable disease, and the third phase, also termed as the terminal phase, constitutes the last weeks and days before death (Tarberg et al, 2019). The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway.…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Nurses’ experiences of compassionate care in the palliative pathway

Tarberg

Landstad

Hole

et al. 2020

Journal of Clinical Nursing

Self Cite

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“…As shown in Norway, there is a lack of research on medical staff visits to dying patients and a lack of preparation for dying. 40 Future education on the end-of-life process and communication within the team should aim to improve understanding of caregivers' needs for more guidance. 41 Caregivers should receive emotional support, companionship, and practical help through coaching and training (such as deep breathing or resting).…”

Section: Discussionmentioning

confidence: 99%

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

Huang

Tsao

2020

Am J Hosp Palliat Care

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Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

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Mediating role of self‐efficacy between unmet needs and quality of life in palliative cancer caregivers

Cheng

Leung

et al. 2023

Psycho-Oncology

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Objective: Although unmet support needs are associated with health-related quality of life (HRQOL) in cancer caregivers, little is known about the mechanism underlying the relationship between two variables. The self-efficacy (SE) theory and literature suggest that caregiving SE is important in the perception of and reaction to caregiving demands, which in turn affects HRQOL. The aim of this study was to examine whether caregiving SE mediates the relationship between unmet support needs and HRQOL in family caregivers of palliative cancer patients. Methods:This secondary analysis used the data from 125 family caregivers of palliative cancer patients who were recruited from two public hospitals in Hong Kong.The caregivers completed a survey questionnaire that covered socio-demographic characteristics, unmet support needs, caregiving SE, and HRQOL. Parallel mediation analyses were conducted via SPSS PROCESS macro (Model 4) to test the hypothesized models. Results:The direct effect of unmet support needs on mental HRQOL was significant (effect = −0.49, 95% CI = −0.06 to −0.92). For the indirect effect, only caregiving SE in the domain of 'care for the care recipient' mediated the relationship between unmet support needs and mental HRQOL (effect = −0.32, 95% CI = −0.08 to −0.59). Conclusion:The findings suggest that caregiving SE may function as a mechanism through which unmet support needs influence mental HRQOL in family caregivers of palliative cancer patients. Healthcare providers should consider developing supportive care interventions to improve caregivers' HRQOL by incorporating effective strategies to enhance SE and reduce unmet needs for this population.

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

Cited by 47 publications

References 42 publications

Nurses’ experiences of compassionate care in the palliative pathway

Nurses’ experiences of compassionate care in the palliative pathway

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

Mediating role of self‐efficacy between unmet needs and quality of life in palliative cancer caregivers

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