Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: a systematic review of the research literature
Abstract
Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.
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Partners' baseline distress was relatively low compared to previous studies, leaving less room for improvement in the primary outcome.
“Second, partners’ baseline distress was relatively low when compared to the results of previous studies (e.g., [39]), leaving less room for improvement in the primary outcome [40].”
The needs of partners have been overlooked and only a few interventions target the partners' self-care as primary aim.
“The needs of the partners have been overlooked and only a few interventions target the partners’ self-care as primary aim [4,5].”
Most existing psychosocial interventions for partners were aimed at couples instead of the partner alone, and their primary focus was often on the well-being of the patients.
“However, most of these interventions were aimed at couples instead of the partner alone, and as a consequence the primary focus was often on the well-being of the patients.”
A recent meta-analysis and two recent systematic reviews identified a variety of psychosocial interventions for partners of cancer patients.
“A recent meta-analysis [4] and two recent systematic reviews [5,2] identified a variety of psychosocial interventions for partners.”
Existing interventions for partners are often not theory-based and lack thorough evaluation.
“Finally, the interventions are often not theory-based and lack thorough evaluation [5,9].”
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Do Couple-Based Interventions Make a Difference for Couples Affected by Cancer?: A Systematic Review
Regan, T. W., Lambert, S. D., Girgis, A., Kelly, B., Kayser, K., & Turner, J. (2012) · BMC Cancer · doi:10.1186/1471-2407-12-279 · Cited by 185 · see citing works
The Australian Cancer and Sexuality Study Team, Ussher, J. M., Perz, J., & Gilbert, E. (2015) · BMC Cancer · doi:10.1186/s12885-015-1243-8 · Cited by 169 · see citing works
Self-citationUssher, J. M., Wong, W. K. T., & Perz, J. (2010) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/1363459310367440 · Cited by 119 · see citing works
Self-citationSelf-regulation: an important construct in health psychology research and practice
Hagger, M. S. (2010) · Health Psychology Review · doi:10.1080/17437199.2010.503594 · Cited by 119 · see citing works
Falomir‐Pichastor, J. M., Berent, J., & Pereira, A. (2011) · Health Psychology Review · doi:10.1080/17437199.2011.570516 · Cited by 66 · see citing works
Psychological intervention with couples coping with breast cancer: a systematic review
Brandão, T., Schulz, M. S., & Matos, P. M. (2014) · Psychology & Health · doi:10.1080/08870446.2013.859257 · Cited by 65 · see citing works
The Gendered Construction and Experience of Difficulties and Rewards in Cancer Care
Ussher, J. M., Sandoval, M., Perz, J., Wong, W. K. T., & Butow, P. N. (2013) · Qualitative Health Research · doi:10.1177/1049732313484197 · Cited by 56 · see citing works
Self-citationUpdated meta-review of evidence on support for carers
Thomas, S., Dalton, J., Harden, M., Eastwood, A. J., & Parker, G. M. (2017) · Health Services and Delivery Research · doi:10.3310/hsdr05120 · Cited by 51 · see citing works
Tsianakas, V., Robert, G., Richardson, A., Verity, R., Oakley, C. M., Murrells, T., Flynn, M., & Ream, E. (2015) · Supportive Care in Cancer · doi:10.1007/s00520-015-2677-x · Cited by 50 · see citing works
Köhle, N., Drossaert, C. H. C., ten Klooster, P. M., Schreurs, K. M. G., Hagedoorn, M., Van Uden-Kraan, C. F., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2021) · Supportive Care in Cancer · doi:10.1007/s00520-021-06051-w · Cited by 45 · see citing works
“, [39]), leaving less room for improvement in the primary outcome [40].”
BackgroundKöhle, N., Drossaert, C. H. C., Jaran, J., Schreurs, K. M. G., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2017) · BMC Public Health · doi:10.1186/s12889-017-4121-2 · Cited by 39 · see citing works
The Impact of Cancer and Chronic Conditions on Caregivers and Family Members
Lambert, S., Levesque, J. V., & Girgis, A. (2016) · Springer eBooks · doi:10.1007/978-981-10-1844-2_6 · Cited by 41 · see citing works
Köhle, N., Drossaert, C. H., Schreurs, K. M., Hagedoorn, M., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2015) · BMC Public Health · doi:10.1186/s12889-015-1656-y · Cited by 38 · see citing works
“A recent metaanalysis [4] and two recent systematic reviews [5,2] identified a variety of psychosocial interventions for partners.”
BackgroundInfluentialReam, E., Pedersen, V. H., Oakley, C. M., Richardson, A. M., Taylor, C., & Verity, R. (2013) · European Journal of Cancer Care · doi:10.1111/ecc.12083 · Cited by 39 · see citing works
Kirk, S. A., & Fraser, C. (2013) · Palliative Medicine · doi:10.1177/0269216313507626 · Cited by 39 · see citing works
Liu, S., Zhang, R., & Kishimoto, T. (2020) · Psychology Health & Medicine · doi:10.1080/13548506.2020.1738019 · Cited by 37 · see citing works
Grégoire, C., Nicolas, H., Bragard, I., Delevallez, F., Merckaert, I., Razavi, D., Waltregny, D., Faymonville, M.-É., & Vanhaudenhuyse, A. (2018) · BMC Cancer · doi:10.1186/s12885-018-4607-z · Cited by 37 · see citing works
Ogez, D., Péloquin, K., Bertout, L., Bourque, C.-J., Curnier, D., Drouin, S., Laverdière, C., Marcil, V., Ribeiro, R., Callaci, M., et al. (2019) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-019-09612-8 · Cited by 35 · see citing works
Köhle, N., Drossaert, C. H., Oosterik, S., Schreurs, K. M., Hagedoorn, M., van Uden-Kraan, C. F., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2015) · JMIR Cancer · doi:10.2196/cancer.4631 · Cited by 27 · see citing works
Atefi, G. L., de Vugt, M. E., van Knippenberg, R. J. M., Levin, M. E., Verhey, F. R. J., & Bartels, S. L. (2023) · Clinical Psychology Review · doi:10.1016/j.cpr.2023.102341 · Cited by 30 · see citing works
Hawkey, A., Ussher, J. M., Perz, J., Parton, C., Patterson, P., Bateson, D. J., Hobbs, K., & Kirsten, L. T. (2020) · European Journal of Cancer Care · doi:10.1111/ecc.13348 · Cited by 29 · see citing works
Self-citationModels of support to family members during the trajectory of cancer: A scoping review
Samuelsson, M., Wennick, A., Jakobsson, J., & Bengtsson, M. (2021) · Journal of Clinical Nursing · doi:10.1111/jocn.15832 · Cited by 27 · see citing works
Regan, T. W., Levesque, J. V., Lambert, S., & Kelly, B. J. (2015) · PLoS ONE · doi:10.1371/journal.pone.0133837 · Cited by 25 · see citing works
SINFIELD, P., BAKER, R., ALI, S., & RICHARDSON, A. (2012) · European Journal of Cancer Care · doi:10.1111/j.1365-2354.2012.01341.x · Cited by 23 · see citing works
Duke, S., Campling, N. C., May, C. R., Lund, S., Lunt, N. T., Bartlett, G., Harris, L., Flannery, E., Connolly, M., Booth, P., et al. (2020) · BMC Palliative Care · doi:10.1186/s12904-020-00647-5 · Cited by 22 · see citing works
Hagger, M. S. (2010) · Health Psychology Review · doi:10.1080/17437191003647306 · Cited by 21 · see citing works
Ream, E., Richardson, A. M., Lucas, G., Marcu, A., Foster, R., Fuller, G., & Oakley, C. M. (2020) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2020.101861 · Cited by 20 · see citing works
Ohlsson-Nevo, E., Karlsson, J., & Nilsson, U. (2016) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2015.10.002 · Cited by 20 · see citing works
Cohee, A. A., Storey, S., Winger, J. G., Cella, D. F., Stump, T. E., Monahan, P. O., & Champion, V. L. (2020) · Journal of Patient-Reported Outcomes · doi:10.1186/s41687-020-0184-4 · Cited by 18 · see citing works
Köhle, N., Drossaert, C. H. C., Van Uden-Kraan, C. F., Schreurs, K. M. G., Hagedoorn, M., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2018) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2017.1397831 · Cited by 16 · see citing works
Farquhar, M. C., Penfold, C., Walter, F. M., Kuhn, I. L., & Benson, J. (2016) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2015.12.341 · Cited by 17 · see citing works
Ohlsson‐Nevo, E., Andershed, B., Nilsson, U. G., & Anderzén‐Carlsson, A. (2012) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2012.09.001 · Cited by 16 · see citing works
Schuit, A. S., Holtmaat, K., Hooghiemstra, N., Jansen, F., Lissenberg-Witte, B. I., Coupé, V. M. H., & Leeuw, I. M. V. (2020) · Trials · doi:10.1186/s13063-019-4037-5 · Cited by 15 · see citing works
Ohlsson‐Nevo, E., Andershed, B., & Nilsson, U. G. (2016) · Nordic journal of nursing research · doi:10.1177/2057158516679790 · Cited by 12 · see citing works
Fourie, I. (2020) · ISIC: The Information Behaviour Conference (ISIC) · doi:10.47989/irisic2003 · Cited by 7 · see citing works
Mahendran, R., Tan, J. Y. S., Griva, K., Lim, H. A., Ng, H. Y., Chua, J., Lim, S. E., & Kua, E. H. (2015) · BMJ Open · doi:10.1136/bmjopen-2015-008527 · Cited by 7 · see citing works
Gender differences in research samples of family carers of adults with cancer: a systematic review
Young, J., Kyle, R. G., & Sun, A. (2020) · International Journal of Care and Caring · doi:10.1332/239788220x15984632524776 · Cited by 6 · see citing works
Regan, T. W., Acquati, C., & Zimmerman, T. K. (2018) · Springer eBooks · doi:10.1007/978-3-319-77432-9_14 · Cited by 6 · see citing works
Rangel-Domínguez, N. E., Huertas, L. A., Ornelas-Mejorada, R. E., Allende‐Pérez, S., Landa-Ramírez, É., & Sosa, J. J. S. (2013) · Psicooncología · doi:10.5209/rev_psic.2013.v10.n2-3.43455 · Cited by 5 · see citing works
Support for family members in routine outpatient colorectal cancer care
Samuelsson, M. (2024) · doi:10.24834/isbn.9789178774944 · Cited by 5 · see citing works
Lu, S.-H., Yiin, J.-J., Lin, Y.-P., & Lee, K.-C. (2024) · Cancer Nursing · doi:10.1097/ncc.0000000000001387 · Cited by 5 · see citing works
Zhang, Q., Chen, J., Fang, K., Liu, Q., Zhang, P., Bai, J., & Zhang, C. (2023) · Nursing Open · doi:10.1002/nop2.2064 · Cited by 4 · see citing works
Utilizing a Narrative Approach to Increasing Intimacy After Prostate Cancer
McCoy, M. A., Stinson, M. A., Bermúdez, J. M., & Gladney, L. A. (2013) · Journal of Creativity in Mental Health · doi:10.1080/15401383.2013.763684 · Cited by 3 · see citing works
Theiling, P. (2016) · Cited by 3 · see citing works
Rangel-Domínguez, N. E., Robles, R., & Sosa, J. J. S. (2023) · Psicología y Salud · doi:10.25009/pys.v34i1.2839 · Cited by 2 · see citing works
Isaksson, J., Lilliehorn, S., & Salander, P. (2018) · Psycho-Oncology · doi:10.1002/pon.4925 · Cited by 1 · see citing works
The Experiences of Partners of Cardiac Patients: Sense of Coherence and Cardiac Beliefs
Jackson, K. F. (2011) · City Research Online (City University London)
Sexuality After Colorectal Cancer Treatment: A Narrative Synthesis
Bourque, M. (2014) · DalSpace (Dalhousie University)
Ussher, J. M., Butow, P. N., Wain, G., Sundquist, K. J., Batt, G., Perz, J., Gilbert, E., Sandoval, M., & Hadlow, H. (2010)
Self-citation
- Authors
- Ussher, J. M., Perz, J., Hawkins, Y., & Brack, M.
- Affiliations
- Western Sydney University (AU)
- Corresponding author
- Ussher, Jane Maria
- Venue
- Health Psychology Review
- Publisher
- Informa UK Limited
- Published
- 2009-03
- Volume
- 3
- Issue
- 1
- Pages
- 85-107
- ISSN
- 1743-7199 (ISSN-L)
- 1743-7202
- OpenAlex
- W2061347778
- Cited by
- 50
- References
- 112
- Citations by year
- 2024: 3 · 2023: 3 · 2021: 2 · 2020: 8 · 2019: 1 · 2018: 4 · 2017: 2 · 2016: 5 · 2015: 7 · 2014: 1 · 2013: 5 · 2012: 3
- FWCI
- 0.43
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Health Psychology Review (publishedVersion)
- Funders
- Australian Research Council
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- informal caregivers, cancer patients, psychosocial interventions, caregiver psychological distress, psychoeducation, couple therapy, bereavement, home-based palliative care, problem solving, support groups, arts-based interventions, dyadic coping, relationship quality, sexual satisfaction, intervention efficacy
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.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
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