A systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer
Open accessAbstract
Purpose Fear of cancer recurrence (FCR) may be equally prevalent, persistent and burdensome in cancer caregivers as in survivors. This systematic review evaluated FCR prevalence, severity, correlates, course, impact and interventions in cancer caregivers.Methods Electronic databases were searched from 1997 to May 2021. Two reviewers identified eligible peer-reviewed qualitative or quantitative studies on FCR in adult caregivers or family members of adult cancer survivors. The risk of bias was assessed using the Cochrane Risk of Bias tools for randomised and non-randomised studies and the Mixed-Methods Appraisal Tool. A narrative synthesis and thematic synthesis occurred on quantitative and qualitative studies, respectively.Results Of 2418 papers identified, 70 reports (59 peer-reviewed articles, 11 postgraduate theses) from 63 studies were included. Approximately 50% of caregivers experienced FCR. Younger caregivers and those caring for survivors with worse FCR or overall health reported higher FCR. Most studies found caregivers' FCR levels were equal to or greater than survivors'. Caregivers' FCR was persistently elevated but peaked approaching survivor follow-up appointments. Caregivers' FCR was associated with poorer quality of life in caregivers and survivors. Three studies found couple-based FCR interventions were acceptable, but had limited efficacy.Conclusions FCR in caregivers is prevalent, persistent and burdensome. Younger caregivers of survivors with worse overall health or FCR are at the greatest risk. Further research on identifying and treating caregivers' FCR is required.Implications for cancer survivors Caregiver and survivor FCR are similarly impactful and appear interrelated. Addressing FCR may improve outcomes for both cancer caregivers and survivors.
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To date, three studies (two qualitative and one RCT) have been developed to address FCR in caregivers.
“To date, three studies (two qualitative and one randomized control trial [RCT]) [16] have been developed to address FCR in caregivers.”
FCR in caregivers is persistent, associated with lower QoL, lower functioning, and higher psychological distress.
“FCR in caregivers, similarly to cancer survivors, is persistent, associated with lower QoL, lower functioning, and higher psychological distress [16].”
All three studies focused specifically on FCR within dyads (survivors and caregivers).
“all of them focused specifically on FCR within dyads (survivors and caregivers).”
Approximately 50% of caregivers experience levels of FCR equal or greater than those reported by cancer survivors.
“approximately 50% of caregivers experience levels of FCR equal or greater than those reported by cancer survivors.”
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Szczesny, E. C. (2024) · Library, Museums and Press - UDSpace (University of Delaware) · doi:10.58088/ffv0-b805 · Cited by 2 · see citing works
Again: An account of demoralisation in patients and families experiencing recurrence of cancer
García‐Vivar, C. (2007) · Edinburgh Research Archive (University of Edinburgh) · Cited by 2 · see citing works
Cavers, D. (2010) · ERA · Cited by 2 · see citing works
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Storytelling as part of cancer rehabilitation to support cancer patients and their relatives
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Sexual intimacy and fear of recurrence from the perspective of partners of breast cancer patients
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Flagged first, then by citations
3 of the 109 references couldn’t be matched to a known paper.
Cited by
Sorted by citations
Fear of Cancer Recurrence or Progression: What Is It and What Can We Do About It?
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Fear of Cancer Recurrence in Differentiated Thyroid Cancer Survivors: A Systematic Review
Hampton, J., Alam, A., Zdenkowski, N., Rowe, C. W., Fradgley, E. A., & O’Neill, C. J. (2024) · Thyroid · doi:10.1089/thy.2023.0642 · Cited by 26 · see citing works
Cormican, O., & Dowling, M. (2022) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2022.151338 · Cited by 20 · see citing works
Lamarche, J., Cusson, A., Nissim, R., Avery, J., Wong, J., Maheu, C., Lambert, S. D., Laizner, A. M., Jones, J., Esplen, M. J., et al. (2023) · Frontiers in Digital Health · doi:10.3389/fdgth.2023.1129536 · Cited by 18 · see citing works
“Approximately 50% of FC experience levels of FCR equal or greater than those reported by cancer survivors (16).”
BackgroundSelf-citationA qualitative exploration of fear of cancer recurrence in caregivers
Banks, H., Webb, K., Sharpe, L., & Shaw, J. (2023) · Psycho-Oncology · doi:10.1002/pon.6149 · Cited by 14 · see citing works
Rimmer, B., Balla, M., Dutton, L., Lewis, J., Burns, R., Gallagher, P., Williams, S., Araújo‐Soares, V., Finch, T. L., & Sharp, L. (2023) · Qualitative Health Research · doi:10.1177/10497323231204740 · Cited by 15 · see citing works
Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study
Webb, K., Sharpe, L., Russell, H., & Shaw, J. (2023) · Psycho-Oncology · doi:10.1002/pon.6255 · Cited by 14 · see citing works
Chen, Z., Ni, P., Wu, B., Ko, E., Liao, J., Lin, H., & Ma, P. (2025) · Journal of Cancer Survivorship · doi:10.1007/s11764-025-01812-6 · Cited by 13 · see citing works
Numerical solutions of systems of nonlinear equations
Bus, J. C. P. (1980) · Data Archiving and Networked Services (DANS) · Cited by 13 · see citing works
Şahin, T. K., Şahin, E. A., Gungor, H. N., Güven, D. C., Barışta, İ., & Akın, S. (2025) · Cancer Medicine · doi:10.1002/cam4.70561 · Cited by 11 · see citing works
Shi, Y., Dai, J., Kuai, B.-X., Xiaoqin, S., Yang, R., Gong, S., & Guo, Y. (2023) · Asia-Pacific Journal of Oncology Nursing · doi:10.1016/j.apjon.2023.100299 · Cited by 11 · see citing works
Bu, X., Jiang, L., & Leung, D. Y. P. (2025) · Journal of Clinical Nursing · doi:10.1111/jocn.17680 · Cited by 9 · see citing works
Fear of cancer recurrence experienced by pediatric survivors of childhood cancer: a scoping review
Russell, K. B., Roberts, A., Wright, H., Henry, B., Omobhude, O. F., Holmer, P., Drummond, R., Verhesen, T., Forbes, C., Stokoe, M., et al. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-08795-7 · Cited by 9 · see citing works
Fear of Cancer Recurrence as Reminder About Death: Lived Experiences of Cancer Survivors’ Spouses
Urbutienė, E., & Pukinskaitė, R. (2022) · OMEGA - Journal of Death and Dying · doi:10.1177/00302228221123152 · Cited by 6 · see citing works
Ringborg, C. H., Wengström, Y., Schandl, A. R., & Lagergren, P. (2023) · Journal of Advanced Nursing · doi:10.1111/jan.15580 · Cited by 8 · see citing works
Lamarche, J., Ajmera, F., Avery, J., Sehabi, G., Lebel, S., & Nissim, R. S. (2025) · Current Oncology · doi:10.3390/curroncol32040209 · Cited by 5 · see citing works
Self-citationLo, Y.-H., Kuo, C. S., Tsai, C.-C., & Chen, S. (2023) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2023.151497 · Cited by 5 · see citing works
Lamarche, J., Nissim, R., Avery, J., Wong, J., Maheu, C., Lambert, S. D., Laizner, A. M., Jones, J., Esplen, M. J., & Lebel, S. (2024) · Pilot and Feasibility Studies · doi:10.1186/s40814-024-01567-4 · Cited by 4 · see citing works
Self-citationLuckett, T., Ng, C., Lai-Kwon, J. E., Kee, D., Mulhern, B. J., & Joshua, A. M. (2025) · BMC Cancer · doi:10.1186/s12885-025-14368-6 · Cited by 4 · see citing works
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Webb, K., Sharpe, L., Russell, H., & Shaw, J. (2024) · Psycho-Oncology · doi:10.1002/pon.6341 · Cited by 5 · see citing works
Lamarche, J., Nissim, R. S., Avery, J., Wong, J., Maheu, C., Lambert, S., Laizner, A. M., Jones, J. M., Esplen, M. J., & Lebel, S. (2025) · Psycho-Oncology · doi:10.1002/pon.70084 · Cited by 4 · see citing works
Self-citationBu, X., Jiang, L., & Leung, D. Y. P. (2025) · Journal of Clinical Nursing · doi:10.1111/jocn.17790 · Cited by 4 · see citing works
Butler, T., Smith, A. B., Pilatti, K., Brown, B., Anderson, K. M., Morris, B., & Garvey, G. (2023) · Current Oncology · doi:10.3390/curroncol30030222 · Cited by 5 · see citing works
Self-citationLiu, W., Li, W., Deng, L., Luo, X., Tan, Y., Xiang, J., Wu, Y., Hu, Y., Sun, H., & Yang, Y. (2025) · BMC Nursing · doi:10.1186/s12912-025-02964-7 · Cited by 4 · see citing works
Cheng, Y., Liu, A., Dai, J. C., Zhuo, Y., Liu, P., Wu, Q., Li, Z., & Yang, Q. (2025) · Stress and Health · doi:10.1002/smi.70052 · Cited by 3 · see citing works
Family Caregivers’ Experiences Related to Fear of Cancer Recurrence in Caring for Cancer Survivors
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Fear of Cancer Recurrence: Lived Experiences of Cancer Survivors’ Spouses
Urbutienė, E., & Pukinskaitė, R. (2022) · Psichologija · doi:10.15388/psichol.2022.50 · Cited by 1 · see citing works
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Wang, Y., Zheng, R., Li, M., Wu, Y., Zhang, Z., & Wang, J. (2026) · Asia-Pacific Journal of Oncology Nursing · doi:10.1016/j.apjon.2026.100915 · Cited by 1 · see citing works
Tang, J., Ma, D., Ding, Y., Zhou, X., & He, H. (2026) · Clinical Gerontologist · doi:10.1080/07317115.2026.2713635 · Cited by 1 · see citing works
Communication and fear of cancer recurrence in colorectal cancer survivors and their partners
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Fear of recurrence among childhood cancer survivors and their parents: a systematic review
Bruseker, A., van Meelen, T. S., Burchell, G. L., Tromp, J. M., Merks, J. H. M., & Bramer, J. A. M. (2026) · Academia oncology. · doi:10.20935/acadonco8524
- Authors
- Smith, A. ‘., Wu, V. S., Lambert, S., Lamarche, J., Lebel, S., Leske, S., & Girgis, A.
- Affiliations
- Liverpool Hospital (AU)
- St Mary's Hospital Centre (CA)
- University of Ottawa (CA)
- Corresponding author
- Smith, Allan ‘Ben’
- ORCID
- Venue
- Journal of Cancer Survivorship
- Published
- 2021-11-11
- Volume
- 16
- Issue
- 6
- Pages
- 1184-1219
- ISSN
- 1932-2259 (ISSN-L)
- 1932-2267
- OpenAlex
- W3212205809
- Cited by
- 48
- References
- 109
- Citations by year
- 2026: 9 · 2025: 12 · 2024: 7 · 2023: 13 · 2022: 6
- FWCI
- 0.79
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Licence
- Locations
- Journal of Cancer Survivorship (publishedVersion)
- PubMed (publishedVersion)
- Griffith Research Online (submittedVersion, other-oa)
- Funders
- Cancer Institute NSW
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- fear of cancer recurrence, cancer caregivers, family caregivers, cancer survivors, caregiver burden, quality of life, prevalence, couple-based interventions, caregiver age
- MeSH terms
- Adult, Anxiety, Fear, Humans, Neoplasm Recurrence, Local, Quality of Life, Caregivers
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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