ArticleNursing open2019
Silent voices: Family caregivers' narratives of involvement in palliative care.
Article in Nursing open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
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Who cites it
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Practices for supporting relatives of patients in the agonal phase by an interdisciplinary team in palliative care units. consensus research (PROPAGE 2).BMC palliative care · 2025Guideline
- Unclear boundaries: Family caregivers' invisible role in home-based palliative care in Norway: an exploratory analysis of secondary data from two previous studies.International journal of nursing studies advances · 2026Article
- Cultural, religious, and demographic factors shaping Arab healthcare providers' decisions on referring Arab patients to palliative care in Israel: a qualitative study.BMC medical ethics · 2026Article
- Preparing for home death in rural areas - the experience of family caregivers providing palliative cancer care.International journal of circumpolar health · 2025Article
- Family perceptions of the transition from hospital to home palliative care: a phenomenological study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Integrative Oncology and Palliative Care in Iran: Mind, Body, Religion, and Spirituality.Current psychiatry reports · 2025Review
- End-of-life care at home: Dignity of family caregivers.Nursing ethics · 2025Article
- What are family caregivers' experiences of coordinating end-of-life care at home? A narrative review.Palliative & supportive care · 2025Review
- Ambivalent and heavy burdened wanderers on a road less travelled: a meta-ethnography on end-of-life care experiences among family caregivers in rural areas.BMC health services research · 2024Article
- Challenges and coping strategies when caring for terminally ill persons with cancer: perspectives of family caregivers.BMC palliative care · 2024Article
- Normality and compassionate care: experiences from advanced cancer patients in their last time at home.BMC primary care · 2024Article
- Spiritual Distress, Hopelessness, and Depression in Palliative Care: Simultaneous Concept Analysis.Healthcare (Basel, Switzerland) · 2024Review
- Nurse assistants' perception of caring for older persons who are dying in their own home : An interview study.BMC palliative care · 2024Article
- Hospice Family Caregivers' Uncertainty, Burden, and Unmet Needs in Prospective Audio Diaries.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2023Article
- Empathic communication between clinicians, patients, and care partners in palliative care encounters.Patient education and counseling · 2023Article
- Who cares for the carers? carerhelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life.BMC palliative care · 2023Review
- Physicians' narratives of communication with patients and their relatives in different phases of the palliative pathway.BMJ open · 2023Article
- Article
- 'It's not just about me': a qualitative study of couples' narratives about home death when one of the partners is dying of cancer.Palliative care and social practice · 2023Article
- Comparison of palliative care education for family caregivers in high-and-low-income countries: An integrative review.Belitung nursing journal · 2023Review
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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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