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Cited by 6Palliative Care and End-of-Life IssuesPalliative and Oncologic CareGrief, Bereavement, and Mental Health

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

Open access
Breivik, Elisabet, Ervik, Bente, Kitzmüller, Gabriele·2024·BMC Health Services Research
DOI 10.1186/s12913-024-11875-3PMC PMC11663345

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Abstract

Background: As the population ages, more people will be diagnosed with cancer, and they will live longer due to receiving better treatment and optimized palliative care. Family members will be expected to take on more responsibilities related to providing palliative care at home. Several countries have expressed their vision of making home death an option, but such a vision can be more challenging in rural areas. There is a lack of synthesized research providing an in-depth understanding of rural family caregiving for people with cancer at the end of life. Thus, the purpose of this study was to synthesize and reinterpret the findings from qualitative research on rural family caregivers of adult cancer patients at the end of life. Methods: We conducted a meta-ethnography following Noblit and Hare’s approach. A systematic literature search of four databases and extensive manual searches were completed in April 2022. The final sample included twelve studies from six different countries published in 2011–2022. Results: Based on the translation and synthesis of the included studies, four themes were developed (1) providing family care at the end of life in rural areas—a challenging endeavour; (2) the heavy responsibility of rural caregiving—a lonesome experience; (3) working on and behind the scenes; and (4) the strong and weak spots of community connectedness in rural areas. An overarching metaphor, namely, “ambivalent and heavy burdened wanderers on a road less travelled”, provides a deeper understanding of the meaning of rural family caregiving at the end of life. Conclusions: This study provides valuable insights into end-of-life cancer care for rural families on four continents. It is crucial to prepare family caregivers for the demanding role of palliative caregiving in rural areas. To address the long distances and poor access related to specialized health care services, outpatient palliative teams tailored to the families’ individual needs should be provided. In addition, more telehealth services, palliative units, or beds in local nursing facilities may reduce the number of exhausting trips that need to be made by caregivers and patients. Healthcare workers in rural areas need further education in palliative care. Trial registration: The study was registered in PROSPERO.

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  • Caregivers have a central role in cancer care, especially in low-resource settings in the United States and parts of Europe and in low-income to middle-income countries.

    “Given the growing evidence regarding the interdependence of patient and caregiver well‐being 110 , 111 , 112 and caregivers' central role in cancer care, especially in low‐resource settings in the United States and parts of Europe and in low‐income to middle‐income countries, 127 , 128 , 129 , 130 , 131 , 132 , 133”

    From Nonpharmacologic interventions for managing distress, anxiety, and depression for patients with cancer and their family caregivers: A systematic review and meta‐analysis (2026) · cites this paper as [129]

    The Background (page unavailable) says families of people with cancer play a vital role in home-based palliative care and that rural areas often lack services. The Results (page unavailable) include rural studies from the USA, Norway, Scotland, and several African countries. The paper focuses on rural end-of-life care, however; it does not establish the claim for cancer care generally or across low- and middle-income countries as a whole. (LLM, conf=0.84)

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1 of the 71 references couldn’t be matched to a known paper.

Research works printed but not linked: 1

  1. [57]Ducharlet KN. Understanding renal clinician attitudes,experiences and practice of renal supportive care, palliative care and end of life care. [Doctoral Thesis]. Melbourne University; 2021. Available from: https://minerva-access.unimelb.edu.au/items/8bac6201-5e0a-4cb3-a89e-229a0edb54d4. Assessed 14 Dec 2023.

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Authors
Breivik, E., Ervik, B., & Kitzmüller, G.
Affiliations
  • UiT The Arctic University of Norway (NO)
  • University Hospital of North Norway (NO)
Corresponding author
Breivik, Elisabet
ORCID
Venue
BMC Health Services Research
Publisher
Springer Science and Business Media LLC
Published
2024-12-21
Volume
24
Issue
1
Pages
1635-1635
ISSN
1472-6963 (ISSN-L)
DOI
10.1186/s12913-024-11875-3
PMC
PMC11663345
OpenAlex
W4405659324
Cited by
5
References
71
Citations by year
2026: 2 · 2025: 3
FWCI
2.07
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Health Services Research (publishedVersion, cc-by)
  • Research Square (acceptedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • NORA - Norwegian Open Research Archives (submittedVersion, other-oa)
Funders
UiT The Arctic University of Norway
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
Keywords
end-of-life care, family caregivers, rural areas, home-based palliative care, cancer, caregiver burden, community ties, health care access, telemedicine, palliative care education, caregiver experiences
MeSH terms
Adult, Anthropology, Cultural, Family, Female, Humans, Male, Neoplasms, Palliative Care, Rural Population, Terminal Care, Caregivers, Qualitative Research

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