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
A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers
Wang, T., Molassiotis, A., Chung, B., Zheng, S.-L., Huang, H.-Q., & Tan, J.-Y. (2021) · BMC Palliative Care · doi:10.1186/s12904-021-00774-7 · Cited by 32
Profiles of caregivers most at risk of having unmet supportive care needs: Recommendations for healthcare professionals in oncology
Baudry, A.-S., Vanlemmens, L., Anota, A., Cortot, A., Piessen, G., & Christophe, V. (2019) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2019.09.010 · Cited by 34
Essential Package of Palliative Care for Women With Cervical Cancer: Responding to the Suffering of a Highly Vulnerable Population
Krakauer, E. L., Kane, K., Kwete, X. J., Afshan, G., Bazzett‐Matabele, L., Bien-Aimé, D. D. R., Borges, L. F., Byrne-Martelli, S. E., Connor, S. R., Correa, R., et al. (2021) · JCO Global Oncology · doi:10.1200/go.21.00026 · Cited by 34
“Family members of patients with cancer also may experience psychological distress because of fear of losing a loved one, caregiving burden, poverty because of loss of income and medical expenses, or prolonged grief disorder after the patient’s death.(51,52)”
Background
Illness unpredictability and psychosocial adjustment of adolescent and young adults impacted by parental cancer: the mediating role of unmet needs
Landi, G., Düzen, A., Patterson, P., McDonald, F. E. J., Crocetti, E., Grandi, S., & Tossani, E. (2021) · Supportive Care in Cancer · doi:10.1007/s00520-021-06379-3 · Cited by 35
Cancer caregivers unmet needs and emotional states across cancer treatment phases
Yang, W. F. Z., Lee, R. Z. Y., Kuparasundram, S., Tan, T., Chan, Y. H., Griva, K., & Mahendran, R. (2021) · PLoS ONE · doi:10.1371/journal.pone.0255901 · Cited by 37
Death Anxiety in Patients With Advanced Cancer and Their Family Caregivers
Walbaum, C., Philipp, R., Bokemeyer, C., Härter, M. C., Junghans, J., Koch, U., Oechsle, K., Schilling, G., & Vehling, S. (2024) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2024.08.027 · Cited by 34
Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials
Paidipati, C. P., Foxwell, A. M., Mooney‐Doyle, K., Tiller, D., Pinto‐Martin, J. A., & Ulrich, C. M. (2022) · Journal of Family Nursing · doi:10.1177/10748407221098187 · Cited by 33
Supporting Family Caregivers of Advanced Cancer Patients: A Focus Group Study
Nissim, R. S., Hales, S., Zimmermann, C., Deckert, A., Edwards, B. Q., & Rodin, G. (2017) · Family Relations · doi:10.1111/fare.12291 · Cited by 32
Identifying the Unmet Supportive Care Needs, with Concomitant Influencing Factors, in Family Caregivers of Cancer Patients in China
Niu, A., Guo, C., Zhong, D., He, G., Zhong, W., Wang, L., Chen, Y. Z., Shang, L., & Fu, J. (2021) · Asia-Pacific Journal of Oncology Nursing · doi:10.4103/apjon.apjon_52_20 · Cited by 32
“This result is inconsistent with the findings of other countries, such as Germany, Korea, and Iran.([20,23,24]) The highest level of unmet need in this study was the domain of healthcare service and information needs, which is consistent with the results of many previous studies.”
BackgroundResult
Caregiving burden among informal caregivers of African American cancer survivors
Schwartz, K., Beebe-Dimmer, J., Hastert, T. A., Ruterbusch, J. J., Mantey, J., Harper, F., Thompson, H., Pandolfi, S., & Schwartz, A. G. (2021) · Journal of Cancer Survivorship · doi:10.1007/s11764-020-00956-x · Cited by 37
Quality of life and associated factors among adults living with cancer and their family caregivers
Gabriel, I. O., Creedy, D. K., & Coyne, E. (2021) · Nursing and Health Sciences · doi:10.1111/nhs.12823 · Cited by 31
Dyadic effects of social support, illness uncertainty on anxiety and depression among lung cancer patients and their caregivers: a cross-sectional study
Wang, T., Sun, J., Gu, D., Shen, S., Zhou, Y., & Wang, Z. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-023-07876-3 · Cited by 31
Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries
Alsirafy, S. A., Nagy, R., Hassan, A. D., Fawzy, R., Abdelhafeez, A. A. M., Husein, M. O., Almashiakhi, M. A., Alabdullateef, S. H., Alghamdi, S. A., & Elyamany, A. M. (2021) · BMC Palliative Care · doi:10.1186/s12904-021-00857-5 · Cited by 30
Living With Hepatocellular Carcinoma Near the End of Life: Family Caregivers’ Perspectives
Hansen, L., Rosenkranz, S. J., Wherity, K., & Sasaki, A. W. (2017) · Oncology nursing forum · doi:10.1188/17.onf.562-570 · Cited by 30
“, esophageal cancer, brain tumor) (Andreassen, Randers, Näslund, Stockeld, & Mattiasson, 2005; Schmer, Ward-Smith, Latham, & Salacz, 2008; Schubart, Kinzie, & Farace, 2008; Sklenarova et al., 2015).”
Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care
Kozlov, E., Niknejad, B., & Reid, M. C. (2017) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909117723860 · Cited by 30
“Caregivers of patients with serious illness also suffer increased psychological burden and are at risk of developing mental health disorders such as anxiety and depression.(15,16) Given the added psychological distress that is often associated with serious illness for both patients and their families, it is essential…”
Background
Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family‐relevant behaviours (KINcode)
Laidsaar‐Powell, R., Butow, P. N., Bu, S., Dear, R. F.-G., Fisher, A. C., Coll, J. R., & Juraskova, I. (2015) · Psycho-Oncology · doi:10.1002/pon.4003 · Cited by 30
When Family Life Contributes to Cancer Caregiver Burden in Palliative Care
Benson, J. J., Washington, K. T., Landon, O. J., Chakurian, D., Demiris, G., & Oliver, D. P. (2023) · Journal of Family Nursing · doi:10.1177/10748407231167545 · Cited by 29
“Evidence suggests family caregivers’ distress levels can even surpass that of their cancer patients (Sklenarova et al., 2015; A.-L. Williams & McCorkle, 2011).”
Background
Palliative Care Providers’ Practices Surrounding Psychological Distress Screening and Treatment: A National Survey
Kozlov, E., Eghan, C., Moran, S., Herr, K., & Reid, M. C. (2017) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909117743960 · Cited by 29
Cancer and Relationship Dissolution: Perspective of Partners of Cancer Patients
Nalbant, B., Karger, A., & Zimmermann, T. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.624902 · Cited by 29
Caring for the person with cancer: Information and support needs and the role of technology
Heynsbergh, N., Botti, M., Heckel, L., & Livingston, P. M. (2018) · Psycho-Oncology · doi:10.1002/pon.4722 · Cited by 28
Psychometric properties of the FACT-G quality of life scale for family caregivers of cancer patients
Song, L., Tan, X. M., Bredle, J. M., Bennett, A. V., & Northouse, L. (2020) · Quality of Life Research · doi:10.1007/s11136-020-02477-7 · Cited by 28
“You just need to learn”: A qualitative study on the information needs of family caregivers of people with lung cancer
Cochrane, A., Gallagher, P., & Dunne, S. K. (2021) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2021.102082 · Cited by 28
Associations between dyadic coping and supportive care needs: findings from a study with hematologic cancer patients and their partners
Weißflog, G., Hönig, K., Gündel, H., Lang, D., Niederwieser, D. W., Döhner, H., Vogelhuber, M., Mehnert, A., & Ernst, J. (2016) · Supportive Care in Cancer · doi:10.1007/s00520-016-3541-3 · Cited by 28
Prognostic Awareness in Caregivers of Patients with Incurable Cancer
Gray, T. F., Forst, D. A., Nipp, R. D., Greer, J. A., Temel, J. S., & El-Jawahri, A. R. (2020) · Journal of Palliative Medicine · doi:10.1089/jpm.2020.0236 · Cited by 27
Caregiver engagement practices in National Cancer Institute Clinical Oncology Research Program settings: Implications for research to advance the field
Nightingale, C. L., Sterba, K. R., McLouth, L. E. S., Kent, E. E., Dressler, E. V. M., Dest, A., Snavely, A. C., Adonizio, C. S., Wojtowicz, M. J., Neuman, H. B., et al. (2020) · Cancer · doi:10.1002/cncr.33296 · Cited by 27
Emotional and sexual health in cancer
Wittmann, D. A. (2015) · Current Opinion in Supportive and Palliative Care · doi:10.1097/spc.0000000000000187 · Cited by 27
Managing Anxiety from Cancer (MAC): A pilot randomized controlled trial of an anxiety intervention for older adults with cancer and their caregivers
Trevino, K. M., Stern, A., Hershkowitz, R., Kim, S. Y., Li, Y., Lachs, M., & Prigerson, H. G. (2021) · Palliative and Supportive Care · doi:10.1017/s1478951521000286 · Cited by 23
“Caregivers tend to be overlooked by the healthcare system and fewer interventions have been developed for caregivers than for patients (Sklenarova et al., 2015; Huang et al., 2019).”
Background
Caregiver Burden and Depression Among Chinese Family Caregivers: the Role of Self-compassion
Xu, S., Zhang, H., & Wang, J. (2020) · Mindfulness · doi:10.1007/s12671-020-01378-7 · Cited by 28
The construction of the structural equation model of burden, benefit finding, and anxiety-depression of esophageal cancer caregivers based on Lazarus stress and coping theory
Wen, X., Wang, D., Li, N., Qin, X., & Gu, D. (2021) · Annals of Palliative Medicine · doi:10.21037/apm-21-1466 · Cited by 26
“A large number of studies have shown that the assignment of long-term care duties brings great pressure and negative emotions to caregivers of cancer patients (3,4), and also affects the quality of care (5,6).”
Background
Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation
Coffey, N. T., Cassese, J., Cai, X., Garfinkel, S., Patel, D., Jones, R., Shaewitz, D., & Weinstein, A. A. (2017) · Journal of Medical Internet Research · doi:10.2196/jmir.7027 · Cited by 26
“However, caregivers often feel that they lack adequate information and support [11,14].”
Background
Urinary Incontinence in a National Cohort of Older Women: Implications for Caregiving and Care Dependence
Yang, E. Z., Lisha, N. E., Walter, L. C., Obedin‐Maliver, J., & Huang, A. J. (2018) · Journal of Women s Health · doi:10.1089/jwh.2017.6891 · Cited by 25
Experiences of Dutch general practitioners and district nurses with involving care services and facilities in palliative care: a mixed methods study
Koper, I., Pasman, H. R. W., & Onwuteaka-Philipsen, B. D. (2018) · BMC Health Services Research · doi:10.1186/s12913-018-3644-2 · Cited by 26
Applying Relational Turbulence Theory to Adult Caregiving Relationships
Knobloch, L. K., Nichols, L. O., & Martindale-Adams, J. L. (2019) · The Gerontologist · doi:10.1093/geront/gnz090 · Cited by 28
On being a caregiver: The experiences of South African family caregivers caring for cancer patients
Maree, J. E., Moshima, D., Ngubeni, M., & Zondi, L. P. (2017) · European Journal of Cancer Care · doi:10.1111/ecc.12801 · Cited by 25
Management of elderly patients suffering from cancer: Assessment of perceived burden and of quality of life of primary caregivers
Germain, V., Dabakuyo-Yonli, T. S., Marilier, S., Putot, A., Bengrine-Lefevre, L., Arveux, P., Manckoundia, P., & Quipourt, V. (2017) · Journal of Geriatric Oncology · doi:10.1016/j.jgo.2016.12.001 · Cited by 26
Unmet Needs and Caregiver Burden Among Family Caregivers of Hospice Patients in South Korea
Lee, J., & Cha, C. (2017) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000350 · Cited by 24
Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project
Palandri, F., Benevolo, G., Iurlo, A., Abruzzese, E., Carella, A. M., Paoli, C., Palumbo, G. A., Bonifacio, M., Cilloni, D., Andriani, A., et al. (2018) · Quality of Life Research · doi:10.1007/s11136-018-1827-2 · Cited by 24
Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting
Zavagli, V., Raccichini, M., Ostan, R., Ercolani, G., Franchini, L., Varani, S., & Pannuti, R. (2022) · Supportive Care in Cancer · doi:10.1007/s00520-021-06655-2 · Cited by 24
“This is in accordance with previous studies [8, 24] and may suggest that FCs are mainly dealing with the patient’s needs rather than their own ones.”
BackgroundResultInfluential
Health-related quality of life of advanced prostate cancer patients and spouses: results from actor-partner interdependence models
Sauer, C., Ihrig, A., Hanslmeier, T., Huber, J. C., Hiller, K., Friederich, H., & Maatouk, I. (2022) · Supportive Care in Cancer · doi:10.1007/s00520-022-07100-8 · Cited by 25
“Previous research has shown the caregivers’ needs for psychooncological support for reducing FoP [37].”
BackgroundSelf-citation
Psychometric validation of the French version of the Supportive Care Needs Survey for Partners and Caregivers of cancer patients
Baudry, A., Anota, A., Bonnetain, F., Mariette, C., & Christophe, V. (2018) · European Journal of Cancer Care · doi:10.1111/ecc.12896 · Cited by 24
Application and Mechanisms of Internet-Based Cognitive Behavioral Therapy (iCBT) in Improving Psychological State in Cancer Patients
Bai, P. (2023) · Journal of Cancer · doi:10.7150/jca.82632 · Cited by 24

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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