Cited by 438Cancer survivorship and careNursing care and researchFamily Support in Illness

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When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors

Sklenarova, Halina, Krümpelmann, Arne, Haun, Markus W., Friederich, Hans‐Christoph, Huber, Johannes, Thomas, Michael, Winkler, Eva C., Herzog, Wolfgang, Hartmann, Mechthild·2015·Cancer

DOI 10.1002/cncr.29223

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Abstract

BACKGROUND: Cancer not only affects patients but also their caregivers. The objective of the current study was to assess the unmet needs of cancer caregivers and to identify possible predictors of their supportive care needs. METHODS: In a cross‐sectional survey, 188 dyads of patients diagnosed with lung, urological, or gastrointestinal cancer and their primary caregivers were recruited. Caregivers were asked to complete the Supportive Care Needs Survey self‐report questionnaire (for partners and caregivers); patients completed the corresponding questionnaire. Both groups provided information regarding their distress (National Comprehensive Cancer Network Distress Thermometer), anxiety, and depression (Patient Health Questionnaire‐4). Clinical characteristics were obtained from medical records. RESULTS: The mean age of the caregivers was 57.8 years. Approximately 72.3% were female. Patients had an average age of 62.5 years, with 33.0% being male. Caregivers were more distressed ( P <.01) and exhibited higher anxiety scores ( P <.01) compared with patients. Approximately 14.4% of caregivers reported no unmet need and 43.6% had at least 10 needs that were unmet. Main caregiver concerns were regarding health care service and information needs followed by emotional and psychological needs. To some degree, unmet needs in patients and caregivers' anxiety predicted unmet caregiver needs. Sociodemographic and clinical variables were not found to be significant predictors. CONCLUSIONS: A substantial percentage of caregivers have unmet needs for support, mainly with regard to fears concerning the patient's condition, receiving disease‐related information, and emotional support for themselves. Prediction of unmet needs in caregivers from other clinical and psychological variables was rather poor. Therefore, by means of the frequency and disparity of caregivers unmet needs, they should be systematically assessed to direct specific offers. Cancer 2015;121:1513–1519. © 2015 American Cancer Society .

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Background
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Suresh, M., Risbud, R. D., Patel, M. I., Lorenz, K., Schapira, L., Gallagher-Thompson, D. E., & TRIVEDI, R. B. (2023) · Cancer Care Research Online · doi:10.1097/cr9.0000000000000047 · Cited by 5
Psychosocial distress and psychosocial resources in couples facing non-melanoma skin cancers and malignant melanoma
Sauer, C., Ullerich, C., Livingstone, E., Tagay, S., Bugaj, T. J., Skoda, E.-M., Teufel, M., Schadendorf, D., & Friederich, H. (2024) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2024.2371344 · Cited by 5
Self-citation
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
Breivik, E., Ervik, B., & Kitzmüller, G. (2024) · BMC Health Services Research · doi:10.1186/s12913-024-11875-3 · Cited by 5
A Nurse-Led Education Program for Pneumoconiosis Caregivers at the Community Level
Cheung, K., Tsang, C. Y. J., Zhang, L. W., & Chan, S. K. Y. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph18031092 · Cited by 6
“In addition, the weak associations of caregivers’ support and enabling needs with other variables (Table 3) might indicate that these needs should be assessed directly [34].”
Background
Profile of informal rural Appalachian caregivers of patients with chronic illnesses
Smith, J. L., Chung, M. L., Miller, J., Biddle, M., Schuman, D. L., Rayens, M. K., Lennie, T. A., Smalls, B. L., Hammash, M., Mudd‐Martin, G., et al. (2021) · The Journal of Rural Health · doi:10.1111/jrh.12560 · Cited by 6
Association between caregiver type and catastrophic health expenditure among households using inpatient medical services: using Korean health panel
Park, Y. S., Kim, H., Yun, I., Park, E., & Jang, S. (2023) · BMC Health Services Research · doi:10.1186/s12913-023-09703-1 · Cited by 5
Paying attention to relatives of cancer patients: What can we learn from their online writings?
van Eenbergen, M. C. H. J., van Engelen, H., Ezendam, N. P. M., van de Poll-Franse, L. V., Tates, K., & Krahmer, E. (2018) · Patient Education and Counseling · doi:10.1016/j.pec.2018.11.004 · Cited by 5
Sources of meaning in family caregivers of terminally ill patients supported by a palliative nursing care team: A naturalistic three-month cohort study
Valdés‐Stauber, J., Lemaczyk, R., & Kilian, R. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951517000220 · Cited by 6
Support for family members in routine outpatient colorectal cancer care
Samuelsson, M. (2024) · doi:10.24834/isbn.9789178774944 · Cited by 5
Breadth and Depth of Patient and Caregiver Supportive Services in Community Oncology (WF‐1803CD)
McLouth, L. E. S., Sterba, K. R., Snavely, A. C., Weaver, K. E., Dressler, E. V. M., Kent, E. E., Adonizio, C. S., Danhauer, S. C., Kuzma, C. S., Moore, T., et al. (2024) · Psycho-Oncology · doi:10.1002/pon.70034 · Cited by 4
People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications
Winter, N., Ugalde, A., Coyne, E., Dieperink, K. B., Jongebloed, H., & Livingston, P. M. (2024) · BMC Public Health · doi:10.1186/s12889-024-19144-y · Cited by 4
“Research has shown that patient outcomes are improved when their caregivers are supported, yet nearly half of all carers of people diagnosed with cancer report feeling increasingly isolated [18] and are impacted by significant levels of psychological distress, often greater than the patient.”
Background
The needs of family caregivers providing palliative home care in Portugal: a multi-stage mixed methods study protocol
Laranjeira, C., Dixe, M. D. A., Coelho, A., Reigada, C., Carneiro, R., & Querido, A. (2025) · Frontiers in Public Health · doi:10.3389/fpubh.2025.1596657 · Cited by 4
Exploring Experiences of Bereaved Caregivers of Older Adult Patients With Acute Myeloid Leukemia
Poor, E., Chan, Y.-N., Iadonisi, K., Tan, K., & Bryant, A. L. (2022) · Clinical journal of oncology nursing · doi:10.1188/22.cjon.135-139 · Cited by 4
Prevalence of and factors associated with demoralization among family caregivers of palliative care patients in Hong Kong
Chan, W. C. H., Yu, C. T. K., Kwok, D. K.-S., & Wan, J. K. M. (2023) · Palliative & Supportive Care · doi:10.1017/s1478951523000950 · Cited by 6
“It is well documented that this population is at a higher risk of physical complications such as higher mortality, and psychological complications such as depression and anxiety (G ̈ otze et al. 2018; Sklenarova et al. 2015).”
Young Adult Cancer Care Partners: A Theoretical Description of an Emerging Population with Unique Needs
Warner, E. L., Hebdon, M., Tay, D. L., Smith, K., Welling, A., & Xu, J. (2023) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph20176646 · Cited by 4
“On the other hand, YACCs may become isolated and feel alone if they do not have robust social networks to help them fulfill their caregiving responsibilities [25].”
Background
Information Support Provided by Specialized Nurses via Mobile Healthcare App May Improve Treatment Adherence of Breast Cancer Patients: An Observational Study
Dong, X., Yu, J., Nie, L., Wu, Y., Lu, Y., Qin, Y., Jin, Y., Chen, Y., Gu, C., Gan, L., et al. (2023) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2023.151511 · Cited by 4
Effect of the Caregivers-to-Caregivers Training Programme on informed caregivers of persons with mental disorders: A pilot study
Jiang, Y. L., Yin, F., Lv, Z. Y., Hou, H. B., Yang, B. X., Liu, Q., Fu, S.-Y., Zhang, J., & Wang, X. Q. (2023) · International Journal of Social Psychiatry · doi:10.1177/00207640231207572 · Cited by 4
“Information and available resources are the primary needs of caregivers, and these needs have been met through C2C (Sklenarova et al., 2015).”
Background
Quality of Life of Patients With Cancer at the Beni Mellal Oncology Center
Aboufaras, M., Selmaoui, K., & Ouzennou, N. (2024) · Value in Health Regional Issues · doi:10.1016/j.vhri.2023.12.002 · Cited by 4
Development and validation of the CARE‐FCR: A caregiver‐specific measure of fear of cancer recurrence and progression
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Oliveira, C., Lisboa, I. C., Sotero, L. M. L., & Relvas, A. P. (2025) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2025.102789 · Cited by 8
Psychosocial situation, burden, and unmet needs among informal caregivers prior to hematopoietic stem cell transplantation: a systematic review of quantitative and qualitative data
Yang, X., Zeng, Q., Tan, S., Zhou, H. H., Qiu, X., & Jin, Y. (2025) · Supportive Care in Cancer · doi:10.1007/s00520-024-09073-2 · Cited by 4
“Several studies [5, 12] indicate that caregivers experience unmet needs throughout the caregiving journey, closely linked to their overall burden.”
O acompanhante do paciente oncológico em fase terminal: percepção do técnico de enfermagem
Bernardes, J. F., Nolasco, F. F., Jardim, A. S. L., Cunha, G. R., Takeshita, I. M., & Barroso, R. A. D. A. (2019) · Avances en Enfermería · doi:10.15446/av.enferm.v37n1.71351 · Cited by 4
Resource utilization among informal caregiver of lung cancer patients undergoing treatment
Lee, C., Gonsalves, C. L., Gao-Kang, J., Pickrell, W. G., & Barker, R. F. (2022) · Patient Experience Journal · doi:10.35680/2372-0247.1555 · Cited by 4
“36,37 Contrary to Litzelman et al, our intra-class correlation testing did not yield any significant patterns of relatedness between informal caregiver and care recipient’s perceived level of support.”
Result
Designing Remote Patient Monitoring Technologies for Post-operative Home Cancer Recovery: The Role of Reassurance
Timinis, C., Opie, J., Watt, S., Khetrapal, P., Kelly, J. D., Mavrikis, M., Rogers, Y., & Drobnjak, I. (2023) · Lecture notes in computer science · doi:10.1007/978-3-031-42280-5_38 · Cited by 4
“It is also the time when patients are left on their own after a period where others were responsible for looking after them [49].”
Exploring the acceptability and benefits of group pretreatment consultations for people receiving systemic anticancer therapy
Rowland, E., & Oakley, C. M. (2023) · Cancer Nursing Practice · doi:10.7748/cnp.2023.e1850 · Cited by 4
Psychological experiences of family caregivers of patients with breast cancer: Protocol for a meta‐synthesis
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
“In the current healthcare sys-tem, caregivers' needs for information and support are far from being reached (Sklenarova et al., 2015).”
Background
Ambulatory approach to cancer care. Part 2: the role of nurses and the multidisciplinary team and safety
Comerford, D., & Shah, R. (2019) · British Journal of Nursing · doi:10.12968/bjon.2019.28.4.s20 · Cited by 4
Doctor-Patient Cancer Screening Communications among Church-based Chinese Adults – The Role of Caregiver Experience and Family History
Hou, S. (2021) · Asian Pacific Journal of Cancer Prevention · doi:10.31557/apjcp.2021.22.1.241 · Cited by 4
“…and family history on doctorpatient cancer screening communications among Chinese adults Although there have been a number of studies focusing on the mental or physical health among cancer caregivers (Warapornmongkholkul et al., 2018; Lee et al., 2017; Nipp et al., 2016; Sklenarova et al., 2015).”
Background
Characteristics and Social Support Needs Predicting Anticipatory Grief in the Spouses of Patients with Cancer at the End of Life
Amano, K., Ichikura, K., Hisamura, K., Sakurai, H., Yanaizumi, R., Takahashi, S., Shimizu, Y., Kawada, K., Takahashi, O., Matsushima, E., et al. (2022) · International Journal of Clinical Medicine · doi:10.4236/ijcm.2022.133009 · Cited by 3
Challenges faced by older adults caring for their parents and their relationship with depressive status: Examining internet use as a moderator
Liu, Q., & Liu, W. (2025) · Acta Psychologica · doi:10.1016/j.actpsy.2025.104889 · Cited by 3
Informal care and mental health in Germany: What are the differences between non-migrants and ethnic German immigrants? A longitudinal comparative analysis
Georges, D., & Doblhammer, G. (2023) · Aging & Mental Health · doi:10.1080/13607863.2023.2271866 · Cited by 3
“However, caregiving also affects physical health (Georges, 2022), well-being (Trivedi et al., 2014), or depression and anxiety (Sklenarova et al., 2015).”
Background
Resilience mediates the impact of caregiver burden on quality of life among informal caregivers of gastrointestinal cancer patients receiving adjuvant chemotherapy: A cross-sectional study
Song, R., Sun, J. Y., Rui, X., & Jiang, X. (2024) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2024.102753 · Cited by 6
Pilot Randomized Trial of an Educational Intervention About Immunotherapy for Patients With Advanced Cancer and Their Caregivers
Petrillo, L. A., Hsu, K. E., Pintro, K., Rabideau, D. J., Zhou, A. Z., Sarathy, R., Tran, A., Sullivan, R. J., Reynolds, K. L., El-Jawahri, A. R., et al. (2025) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2024.7079 · Cited by 3
“41 They commonly consult online sources for information about cancer, yet hesitate to discuss what they ﬁ nd for fear that clinicians will perceive them as confronta-tional or discredit their sources.”
Treating Depression in the Caregivers of Cancer Patients
Louis, J. M. (2017) · Journal of Psychology & Clinical Psychiatry · doi:10.15406/jpcpy.2017.07.00455 · Cited by 3
Health information technology and family caregiving: Policy initiatives
Ruggiano, N. (2021) · Elsevier eBooks · doi:10.1016/b978-0-12-813898-4.00014-2 · Cited by 3
Informational and supportive needs of the family caregivers of women with breast cancer in a low resource context: A cross-sectional study
Moshtagh, M., & Allahyari, E. (2022) · Palliative Medicine in Practice · doi:10.5603/pmpi.2021.0031 · Cited by 3
Prospective assessment of psychopathological symptoms and their relation to demographic factors in primary caregivers of cancer patients throughout chemotherapy
Goula, P., Iconomou, G., Gourzis, P., Kalofonos, H., Georgila, E., Maria, A., & Assimakopoulos, K. (2021) · Supportive Care in Cancer · doi:10.1007/s00520-021-06662-3 · Cited by 4
Caregivers of older adults in palliative care: level of burden and depressive symptoms
Teixeira, L. A., Borges, M. D. C., de Abreu, D. P. H., Ribeiro, K. B., Shimano, S. G. N., & Patrizzi, L. J. (2022) · Fisioterapia em Movimento · doi:10.1590/fm.2022.35132 · Cited by 3
Cancer care during the Covid-19 pandemic from the perspective of patients and their relatives: A qualitative study
van Puffelen, A. J., van der Sar, L. J., Moerman, F., Eicher, M., & Oldenmenger, W. H. (2023) · Heliyon · doi:10.1016/j.heliyon.2023.e19752 · Cited by 3
Care quality and satisfaction at the cancer hospital – a questionnaire study of older patients with cancer and their family members
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“It is also likely that family members themselves have their own fears about the patient’s illness and deterioration [33] and were reporting these fears rather than those of the patient [34].”
Background
An online intervention to improve oncology health professional self-efficacy in communicating with carers: Hybrid effectiveness-implementation evaluation of the eTRIO program
Laidsaar‐Powell, R., Giunta, S., Butow, P. N., Turner, S., Costa, D. S. J., Saunders, C. M., Koczwara, B., Kay, J., Jefford, M., Schofield, P. E., et al. (2024) · Patient Education and Counseling · doi:10.1016/j.pec.2024.108251 · Cited by 4
Spouses of patients treated for colon cancer: identification of key caregiver skills using the Delphi method
Roux, E. L., Meunier-Beillard, N., Simonel, C., Omorou, A., & Lejeune, C. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-08456-9 · Cited by 3
Health anxiety by proxy among parents: Measuring health anxiety for self, child and partner and its associations with family functioning
Kubb, C., & Foran, H. M. (2024) · Health Psychology Open · doi:10.1177/20551029241251995 · Cited by 3
“High rates of anxiety were found among family caregivers across a variety of diseases or impairments (Denno et al., 2013; Mahoney et al., 2005; Sklenarova et al., 2015) and where, among others, fear of deterioration of partner ’ s health status was reported.”
Comprehensive needs assessment tool for informal cancer caregivers (CNAT-ICs): Instrument development and cross-sectional validation study
Weeratunga, E. B., Goonewardena, S., & Meegoda, L. (2024) · International Journal of Nursing Studies Advances · doi:10.1016/j.ijnsa.2024.100240 · Cited by 4
“Due to these reasons and as the coping mechanism (Sklenarova et al., 2015b; Weeratunga et al., 2019), the religious/spiritual domain scored the highest values.”
Exploring Factors Influencing the Physical and Mental Quality of Life of Caregivers of Cancer Patients: A Cross-Sectional Study at Hassan II University Hospital Center
Bourissi, H., Bourkhime, H., Rhazi, K. E., & Mellas, S. (2024) · Cureus · doi:10.7759/cureus.70074 · Cited by 3

Authors: Sklenarova, H., Krümpelmann, A., Haun, M. W., Friederich, H., Huber, J., Thomas, M., Winkler, E. C., Herzog, W., & Hartmann, M.
Affiliations: Heidelberg University (DE)
University Hospital Heidelberg (DE)
Corresponding author: Hartmann, Mechthild
ORCID: Haun, Markus W.
Friederich, Hans‐Christoph
Huber, Johannes
Thomas, Michael
Winkler, Eva C.
Herzog, Wolfgang
Hartmann, Mechthild
Venue: Cancer
Publisher: Wiley
Published: 2015-02-11
Volume: 121
Issue: 9
Pages: 1513-1519
ISSN: 0008-543X (ISSN-L)
1097-0142
DOI: 10.1002/cncr.29223
OpenAlex: W1581989257
Cited by: 438
References: 30
Citations by year: 2026: 22 · 2025: 33 · 2024: 49 · 2023: 50 · 2022: 50 · 2021: 61 · 2020: 52 · 2019: 35 · 2018: 38 · 2017: 28 · 2016: 13 · 2015: 7
FWCI: 12.52
Type: journal article
Language: en
Open access: closed
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations: Cancer (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Oncology › Cancer survivorship and care
Health Sciences › Nursing › Research and Theory › Nursing care and research
Social Sciences › Psychology › Clinical Psychology › Family Support in Illness
Keywords: informal caregivers, cancer caregivers, unmet supportive care needs, caregiver anxiety, caregiver depression, caregiver distress, cancer survivors, lung cancer, genitourinary cancer, gastrointestinal cancer, emotional support, health information needs, patient-caregiver dyads
MeSH terms: Aged, Anxiety, Cross-Sectional Studies, Depression, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Neoplasms, Surveys and Questionnaires, Social Support, Caregivers

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When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors

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