Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care
Abstract
Background Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. Aim To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. Design Qualitative grounded theory study. Setting Tertiary comprehensive cancer centre. Participants Following participation in a cluster-randomised trial of early palliative care, 23 caregivers (14 intervention and 9 control) of patients with advanced cancer participated in semi-structured interviews to discuss their quality of life. Results The core category was 'living in the patient's world'. Five related themes were 'burden of illness and caregiving', 'assuming the caregiver role', 'renegotiating relationships', 'confronting mortality' and 'maintaining resilience'. There was thematic consistency between trial arms, except for the last two themes, which had distinct differences. Participants in the intervention group engaged in open discussion about the end of life, balanced hope with realism and had increased confidence from a range of professional supports. Controls tended to engage in 'deliberate ignorance' about the future, felt uncertain about how they would cope and lacked knowledge of available supports. Conclusions Caregiver quality of life…
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10 studies emphasized the need of enhancing social support by reinforcing support networks and facilitating access to support groups and associations.
“Among the strategies described, 10 studies [28,29,31,32,36,39,41,50,54,57] emphasized the need of enhancing social support by means of reinforcing the support networks and facilitating access to support groups and associations.”
From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [29]
Ten studies did not describe average age.
“However, it must be highlighted that 10 studies did not describe average age [22,23,24,25,26,27,28,29,30,31].”
From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [29]
26 studies alluded to emotional and psychological problems suffered by caregivers, highlighting anxiety, depression, feelings of grief and distress, and high levels of stress.
“At an emotional level, 26 studies [22,23,25,26,27,28,29,30,33,34,35,36,38,40,41,42,43,44,45,46,47,48,49,50,51,52] alluded to the emotional and psychological problems suffered by caregivers, highlighting anxiety, depression, feelings of grief and distress, and high levels of stress.”
From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [29]
Studies reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making, and lower anxiety and depressive symptoms.
“Whilst studies examining resiliency and preparedness of informal caregivers of advanced cancer patients reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making and lower anxiety and depressive symptoms [3, 8, 9]”
From Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study (2023) · cites this paper as [8]
Cites
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Hidden morbidity in cancer: spouse caregivers
Braun, M., Mikulincer, M., Rydall, A., Walsh, A., & Rodin, G. (2007) · Journal of Clinical Oncology · doi:10.1200/jco.2006.10.0909 · Cited by 526 · see citing works
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Interventions to improve outcomes for caregivers of patients with advanced cancer: a meta-analysis
Chow, R., Mathews, J. J., Cheng, E. Y., Lo, S., Wong, J., Alam, S., Hannon, B., Rodin, G., Nissim, R., Hales, S., et al. (2023) · JNCI: Journal of the National Cancer Institute · doi:10.1093/jnci/djad075 · Cited by 98 · see citing works
Self-citationQuality of Life in Caregivers of Cancer Patients: A Literature Review
Guerra-Martín, M. D., Casado-Espinosa, M. D. R., Gavira-López, Y., Holgado-Castro, C., López-Latorre, I., & Borrallo-Riego, Á. (2023) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph20021570 · Cited by 80 · see citing works
“, 2018 [29] Conceptualize quality of life of caregivers from their own perspective and explore the differences in themes between those who did or did not receive an early palliative care intervention.”
BackgroundToo, W., Lelei, F., Adam, M., & Halestrap, P. (2023) · BMC Palliative Care · doi:10.1186/s12904-022-01048-6 · Cited by 22 · see citing works
“Whilst studies examining resiliency and preparedness of informal caregivers of advanced cancer patients reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making and lower anxiety and depressive symptoms [3, 8, 9], there is less insight into Kenyan experie…”
Background
- Authors
- McDonald, J., Swami, N., Pope, A., Hales, S., Nissim, R., Rodin, G., Hannon, B., & Zimmermann, C.
- Affiliations
- University Health Network (CA)
- Corresponding author
- Zimmermann, Camilla
- Venue
- Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2017-11-13
- Volume
- 32
- Issue
- 1
- Pages
- 69-78
- ISSN
- 0269-2163 (ISSN-L)
- 1477-030X
- OpenAlex
- W2768959263
- Cited by
- 74
- References
- 2
- Citations by year
- 2026: 5 · 2025: 6 · 2024: 17 · 2023: 10 · 2022: 8 · 2021: 12 · 2020: 6 · 2019: 8 · 2018: 2
- FWCI
- 4.12
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Palliative Medicine (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Ontario Ministry of Health and Long Term Care
- Canadian Cancer Society Research Institute (017257, 020509, 017257 and 020509)
- 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
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- caregiver quality of life, early palliative care, advanced cancer, family caregivers, caregiver burden, resilience, professional support, end-of-life discussions, caregiver-patient relationship, caregiver role
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Female, Humans, Male, Middle Aged, Neoplasms, Nursing Care, Palliative Care, Quality of Life, Surveys and Questionnaires, Caregivers, Hospice Care, Qualitative Research, Grounded Theory
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