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Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression
Open accessAbstract
BACKGROUND: Family members of cancer patient's have multiple needs, many of which are not adequately met. Unmet needs may affect psychological distress and quality of life (QOL). The purpose of this study was to assess needs and unmet needs, QOL, symptoms of anxiety and depression, and the relationship between those variables in a large sample of family members of cancer patients in different phases of illness. MATERIAL AND METHODS: Of 332 family members invited to participate, 330 accepted and 223 (67%) completed a cross-sectional, descriptive study. Data was collected with the Family Inventory of Needs (FIN), Quality of Life Scale (QOLS) and the Hospital Anxiety and Depression Scale (HADS). RESULTS: Of 20 needs assessed the mean (SD) number of important needs and unmet needs was 16.4 ± 4.3 and 6.2 ± 5.6, respectively. Twelve important needs were unmet in 40-56% of the sample. The mean number of unmet needs was significantly higher among women than men, other relatives than spouses, younger family members, those currently working and those of patients with metastatic cancer. QOL was similar to what has been reported for healthy populations and cancer caregivers in advanced stages. The prevalence of symptoms of anxiety and depression was high (20-40%). Anxiety scores were higher among women than men and both anxiety and depression scores were highest during years 1-5 compared to the first year and more than five years post diagnosis. There was a positive relationship between number of important needs and QOL, and between needs met and QOL. Additionally, there was a significant relationship between anxiety and unmet needs. Finally, there was a significant relationship between QOL and symptoms of anxiety and depression. CONCLUSION: The results support the importance of screening needs and psychological distress among family members of cancer patients in all phases of illness.
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“Furthermore, the prevalence estimate of anxiety is substantially greater in relation to dementia, than family carers of people with other conditions such as cancer (Friðriksdóttir et al., 2011) and stroke (Loh, Tan, Zhang, & Ho, 2017).”
From Exploring the impact of carer stressors and psychological inflexibility on depression and anxiety in family carers of people with dementia (2020) · cites this paper as Friðriksdóttir et al., 2011
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Items 101–196 of 196
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Psychometric evaluation of a Czech version of the Family Inventory of Needs
Bužgová, R., & Kozáková, R. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951515001029 · Cited by 10
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“An Icelandic cross-sectional study reaching 223 relatives of patients with cancer showed that 20% were anxious, and 41% had depressive symptoms 1 to 5 years post-diagnosis (Friðriksdóttir et al., 2011).”
BackgroundUsing information sources by breast cancer women treated with mastectomy
Latifi, M., Tehrani, H. G., Karami, N. A., Barahmand, N., & Allahbakhshian, L. (2019) · Journal of Education and Health Promotion · doi:10.4103/jehp.jehp_224_18 · Cited by 9
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“The proportion of unmet needs regarding these two items was 30 and 47 %, respectively, on the Family Inventory of Needs (FIN) [30].”
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Bužngová, R., Kozáková, R., & Sikorová, L. (2015) · Journal of Palliative Care · doi:10.1177/082585971503100407 · Cited by 8
Family as a Bridge to Improve Meaning in Latinx Individuals Coping with Cancer
Torres‐Blasco, N., Costas-Muñíz, R., Zamore, C., Porter, L. S., Claros, M., Bernal, G., Shen, M. J., BREITBART, W. S., Rosario-Ramos, L., Peña-Vargas, C., et al. (2022) · Palliative Medicine Reports · doi:10.1089/pmr.2022.0035 · Cited by 7
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“This prevalence rate is greater than that of family carers of people with other conditions, such as cancer (Friðriksdóttir et al., 2011) and stroke (Loh et al., 2017).”
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“Research on the burden of caring for patients with advanced cancer suggests insufficient support for informal caregivers, possibly due to the lack of knowledge about their needs [27–29].”
BackgroundKEMOTERAPİ ALAN MEME KANSERLİ HASTALARA BAKIM VEREN YAKINLARININ YAŞAM KALİTESİ
Eskimez, Z., Tosunöz, İ. K., Öztunç, G., Yeşil, P., Paydaş, S., & Kumaş, G. (2021) · Sağlık Bilimleri Dergisi · doi:10.34108/eujhs.643544 · Cited by 8
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“In other studies the proportion of above cut-off scores (≥ 11) varied between 7% - 40% for anxiety and 5% - 12% for depression (Price et al., 2010; Gough & Hudson, 2009; Janda et al., 2008; Friðriksdóttir et al., 2011).”
BackgroundRelatives’ quality of life and psychological disturbance: a new concern of SLE management
Zeng, F., Xu, Q., Liu, D., Luo, H., Zhou, Y.-O., Ning, W., Chen, J., Zhang, H., Liu, H., Li, Y., et al. (2017) · Clinical Rheumatology · doi:10.1007/s10067-017-3743-1 · Cited by 6
Burden, quality of life and coping strategies of palliative care patients’ caregivers
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Ceylan, S., & Ersin, F. (2021) · Harran Üniversitesi Tıp Fakültesi Dergisi · doi:10.35440/hutfd.854215 · Cited by 6
“7% of the caregivers shared the caregiving process with someone and the quality of life of the caregivers was higher when they shared the caregiving responsibility with other (32).”
BackgroundPreparing for Cancer: A Qualitative Study of Hispanic Patient and Caregiver Needs
Rosario-Ramos, L., Torres-Marrero, S. D., Rivera, T., Navedo, M. E., Burgos, R., Garriga, M., Pacheco, M. D. C., Lopez, B., Torres, Y., & Torres‐Blasco, N. (2024) · Healthcare · doi:10.3390/healthcare12111117 · Cited by 5
“Similar to the distribution of our sample, unmet family members’ needs are seen as higher in women than men [50].”
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“…higher levels of distress, in turn, reported a higher number of care needs (Janda et al., 2008), lower support and higher burden (Kim & Given, 2008; Pitceathly & Maguire, 2003), as well as poor mental health and worse QoL (Colgrove et al., 2007; Friðriksdóttir et al., 2011; Iconomou et al., 2001).”
BackgroundInfluentialQuality of Life and Needs Assessment of Cancer Patients’ Caregivers in the Saudi Culture
Almugti, H. S., Shaiea, M. M., Alhammadi, Y. M., Mawkili, R., Alemam, S., Hamas, R. A., Jurebi, A. M., Alharthi, S. B., Alhazmi, F. I., Bali, M. E., et al. (2022) · Cureus · doi:10.7759/cureus.27591 · Cited by 5
Betker, L., Senßfelder, A., Knorrenschild, J. R., Volberg, C., Berthold, D., Seifart, C., & von Blanckenburg, P. (2024) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2024.02.003 · Cited by 5
Burke, H., & Dunne, S. K. (2022) · Journal of Cancer Survivorship · doi:10.1007/s11764-022-01295-9 · Cited by 5
“Family members of cancer patients experience psychological distress and often have higher levels of anxiety and depression than what was found in the general population, and in some instances, they have higher levels of anxiety and depression than the cancer patients themselves [15] The constant indisposition and the…”
BackgroundCheng, Q., Ng, M. S. N., Chen, Y., Li, X., Liu, G., Zhang, M., & So, W. K. W. (2023) · Cancer Nursing · doi:10.1097/ncc.0000000000001209 · Cited by 5
Gao, R., & Wu, Y. (2024) · Humanities and Social Sciences Communications · doi:10.1057/s41599-024-03284-y · Cited by 7
Włostowska, K., Doboszyńska, A., & Trylińska-Tekielska, E. (2019) · Palliative Medicine in Practice · doi:10.5603/pmpi.2018.0009 · Cited by 4
“The authors do not specify exactly which needs and point to the fact that many are not yet assessed [25].”
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Barraj, M. M. A., Fawaz, M. A., & Badr, L. K. (2019) · Journal of Nursing Education and Practice · doi:10.5430/jnep.v9n9p81 · Cited by 4
“[27] In contrast, two studies indicate that younger visitors of patients in the ICU regarded their needs as more important than older visitors.[33, 34] The discrepancy in results could be explained by the fact the participants in this study were younger than most participants in earlier studies.”
ResultNakajima, S., & Kamibeppu, K. (2022) · BLOOD CELL THERAPY / The official journal of APBMT · doi:10.31547/bct-2021-005 · Cited by 4
Cancer risk factors and factors affecting cancer awareness
Yıldırım, M., Parlak, C., Yıldız, M., Demirci, H., Cetin, O., & Akgul, B. (2012) · Gaziantep medical journal · doi:10.5455/gmj-30-2011-61 · Cited by 4
“Level Health Institute 48 (12,8) University Hospitals 70 (18,7) KETEM 12 (3) Health Foundation 16 (4,2) Private Hospital 10 (2,7) Tuberculosis Clinics 13 (3,4) Total 374 (100)”
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Lauckner, C. (2018) · Oncology nursing forum · doi:10.1188/18.onf.354-358 · Cited by 4
“Many loved ones receive less information about cancer than they need (Friðriksdóttir et al., 2011), which is concerning because they are often relied on to provide cancer information to the patient (Nagler et al.”
Zavagli, V. (2021) · Translational Medicine UniSa · doi:10.37825/2239-9747.1022 · Cited by 4
“In fact, informal caregivers are a vulnerable group: considerable research on caregiving portrays it as a stressful and burdensome experience and many studies show that family carers experience severe strain, with serious negative consequences on their physical and mental health [5-14].”
BackgroundEvaluation of Quality of Life of Breast Cancer Patient Next-of-kin in Turkey
Öğce, F., Ozkan, S., Okçın, F., Yaren, A., & Demiray, G. (2013) · Asian Pacific Journal of Cancer Prevention · doi:10.7314/apjcp.2013.14.5.2771 · Cited by 4
Loved ones within Palliative Care-understanding, strategies and need for support
Benkel, I. (2011) · Gothenburg University Publications Electronic Archive (Gothenburg University) · Cited by 4
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A neglected problem ın caregıvers of cancer patıents: Supportıve care needs
Çelik, A., & Temeltaş, G. (2024) · Health & Research Journal · doi:10.12681/healthresj.34637 · Cited by 2
Sülün, E., Olgaçer, H., & Eren, H. C. (2021) · International Journal of Music Education · doi:10.1177/02557614211027316 · Cited by 3
“(Cipolletta et al., 2013; Friðriksdóttir et al., 2011; Selamat Din et al., 2017).”
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Ham, L., Fransen, H. P., de Graeff, A., Hendriks, M. P., de Jong, W. K., Kloover, J. S., Kuip, E. J. M., Mandigers, C. M. P. W., Sommeijer, D. W., van de Poll, L., et al. (2024) · Journal of Palliative Care · doi:10.1177/08258597241239614 · Cited by 2
“7,18,34 The fi ndings cannot be directly compared between the different studies because of the different time frames and because the studies used different questionnaires to measure unmet needs.”
Marrakchi, A., Chakit, M., Elmorabit, N., Kababri, M. E., Hessni, A. E., & Mesfioui, A. (2024) · Współczesna Onkologia · doi:10.5114/wo.2024.144134 · Cited by 2
“This finding is similar to that of other studies in which problem-focused coping is frequently associated with lower levels of anxiety and depression in PCWC [40, 41].”
ResultPsycho-oncology and Palliative Care: Two Concepts That Fit into Comprehensive Cancer Care
Weber, D., Gründel, M., & Mehnert, A. (2015) · Springer eBooks · doi:10.1007/978-3-662-46202-7_14 · Cited by 2
The validity and reliability of the Turkish version of the Family Inventory of Needs
Sağlam, Z., & Koç, Z. (2021) · Palliative & Supportive Care · doi:10.1017/s1478951521000833 · Cited by 2
“, 2017), comprehensive care involves not only the treatment of the disease but also supporting family members (Fridriksdottir et al., 2011).”
BackgroundInfluentialOshiro, R., Soejima, T., Tada, K., Suzuki, M., Ohno, S., Yubune, K., Nakamura, S., Fukuchimoto, H., Takei, J., Yamauchi, H., et al. (2021) · Japan Journal of Nursing Science · doi:10.1111/jjns.12452 · Cited by 2
Impact of Pain and Evaluation of Education and Self-Care in Patients with Head and Neck Cancer
Schaller, A. S. (2018) · doi:10.3384/diss.diva-147288 · Cited by 2
“Those patients with severe symptoms and high care needs, like the relatives in our studies, experienced a difficult situation and required support and assistance, as reported in prior studies [171-173].”
ResultJiang, Y., Hong, W., Huang, L.-L., Ying, H., & Hu, W. (2024) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2024.1411500 · Cited by 1
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Baduanjin for alleviating anxiety symptoms in elderly cancer patients: An intervention survey study
Li, Y., Wu, F., Zhang, X., Wang, J., & Jiang, J. (2025) · Psycho-Oncologie · doi:10.18282/po3696 · Cited by 1
Panahi, I., Romaniuk, H., Jahan, S., Carter, K., Elston, J., & Garvey, G. (2026) · Cancer Control · doi:10.1177/10732748261458005 · Cited by 1
“26,30 A 2012 review have confirmed the relationship between carer distress and anxiety and depression.”
Dealing with Depression: Communicating with Cancer Patients and Grieving Relatives
Grassi, L. G., Caruso, R., & Nanni, M. G. (2012) · Springer eBooks · doi:10.1007/978-1-4614-3369-9_6 · Cited by 1
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Symptom Features of Terminally Ill Cancer Patients and Depression of Family Caregivers
Kim, H. M., Koh, S., Hwang, I. C., Choi, Y. S., Hwang, S. W., Lee, Y. J., & Kim, Y. S. (2017) · The Korean Journal of Hospice and Palliative Care · doi:10.14475/kjhpc.2017.20.3.188 · Cited by 1
“Depressive disorder is more common among FCs of terminal cancer patients than among patients in other phase of cancer (3).”
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Almeida, S., da Silva, D. R., Frasquilho, D., Costa, B. G. L. D. M., Sousa, B., Baptista, T. M., Grácio, J., Lemos, R., & Oliveira-Maia, A. J. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.1022399 · Cited by 2
“Relatives of patients with cancer are also at high risk of developing affective symptoms, with prevalence rates of anxiety and depression in this population ranging from 20 to 40% (Friðriksdóttir et al., 2011).”
BackgroundAlqaysi, L., Alenezi, A. F., Malallah, K., Alsabea, E., Khalfan, M., Al-Nouri, A., & Jahrami, H. (2024) · Cureus · doi:10.7759/cureus.56989 · Cited by 1
“Although the HADS is a screening tool rather than a diagnostic tool, it suggests that caregivers and family members of cancer patients are at a greater risk of developing depression and anxiety than the 12.5% prevalence of MDD in those patients [4].”
BackgroundMethodResultInfluentialCaregivers’ Experience with Children with Mental Health Needs: A Qualitative Study
Zeinalzad, S., Alavi, M., Haghshenas, M., & Keshvari, M. (2025) · Iranian Journal of Psychiatry and Behavioral Sciences · doi:10.5812/ijpbs-157589 · Cited by 1
“However, this may lead to the failure of the healthcare system to recognize and/or attend to the needs of caregivers and family members (9).”
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Barış, N., & Karabacak, K. (2013) · Clinical and Experimental Health Sciences · doi:10.5455/musbed.20130830095218 · Cited by 1
Familiäre Belastungen bei Krebs
Bergelt, C. (2022) · best practice onkologie · doi:10.1007/s11654-022-00387-3 · Cited by 1
“Die spezifische Situation von Eltern mit einer Krebserkrankung und ihren minderjährigen Kindern wurde bisher selten berücksichtigt [7].”
BackgroundEpidemiology and management of depression in cancer patients
Ng, C. (2012) · Utrecht University Repository (Utrecht University) · Cited by 1
Romer, G. (2012) · Praxis der Kinderpsychologie und Kinderpsychiatrie · doi:10.13109/prkk.2012.61.6.371 · Cited by 1
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Seyedoshohadaee, M., Ayar, P., Mardani‐Hamooleh, M., & Haghani, H. (2016) · Journal of Client-centered Nursing Care · doi:10.32598/jccnc.2.1.27
“The reliability of this test in Iran calculated by the Cronbach α (n=34) has been reported as 78% (Friethriksdottir et al. 2011).”
MethodCrenças e esperança de familiares de mulheres acometidas por câncer de mama
do Nascimento, A. N. (2018) · doi:10.11606/t.7.2018.tde-27042018-104023
PSYCHOLOGICAL PROBLEMS OF FAMILY CAREGIVERS OF PATIENTS WITH SCHIZOPHRENIA
Macwan, S., & Jhala, N. (2020) · PARIPEX-INDIAN JOURNAL OF RESEARCH · doi:10.36106/paripex/2103752
Determinants of the quality of life of informal carers of palliative patients
Masternak, K., Bartoszek, A., Niedorys, B., & Kardas, G. (2020) · Medycyna Paliatywna · doi:10.5114/pm.2020.99119
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Integrative Power of Illness: A Qualitative Study of Cancer Patients
Afrasiabi, H., & Barzideh, K. (2021) · The Qualitative Report · doi:10.46743/2160-3715/2021.4289
Sosiaali- ja terveyspalvelut alueilla - Mikä on terveyden edistämisen asema kunnissa?
Heiliö, T., Saaristo, V., & Ståhl, T. (2013) · STM:n Hallinnonalan avoin julkaisuarkisto (Julkari)
Burden on Family Caregivers Caring for Patients with Cancer in Indonesia
Savitri, W., & Suwarno, S. (2022) · Proceedings Series on Health & Medical Sciences · doi:10.30595/pshms.v2i.226
“[5,6] It is a result from the nature of caregiving which is demanding and overwhelming leading to a stressful moments for caregivers [7] and is perceived as a burden to caregivers.”
BackgroundIntegrating Care into Clinical ResearchPreprint
Pasquale, N. J. (2020) · doi:10.31219/osf.io/pv2ta
Zhuang, B., Su, C., Li, C., Wan, R., Leung, A. Y. M., & Deng, R. (2022) · Research Square · doi:10.21203/rs.3.rs-2322004/v1
Quality of Life for Family Caregivers of Patients with Lymph Nodes Cancer
El-Hamid, H. S. A. E.-L. A., Shafik, S. A., & Saad, A. M. (2023) · The Egyptian Journal of Hospital Medicine · doi:10.21608/ejhm.2023.285032
ปัจจัยทำนายคุณภาพชีวิตของผู้ดูแลในครอบครัวผู้ป่วยมะเร็งระยะสุดท้าย
ส่องแสงจันทร์, จ. (2016) · Chula Digiverse · doi:10.58837/chula.the.2016.612
Uchida, T., Jingu, K., Uno, A., Lin, K., Fengxia, L., Shijie, W., Jingge, L., Akawaza, K., & Yoshii, H. (2023) · Illness Crisis & Loss · doi:10.1177/10541373231201465
“Friðriksdóttir et al. (2011) reported that families with anxiety and depression symptoms have a lower QOL than those without these symptoms, and the present study supports this.”
Cancer and its Psychological Effects on Families
Kapu, R. S., Boniface, M. A., Zachariah, R. E., Haroon, A. M., & Elshamy, M. M. (2024) · Georgian Biomedical News · doi:10.52340/gbmn.2024.01.01.66
Psychological trauma and post-traumatic growth in parents of children with sickle cell disease
Alsaad, A. J., Alghanim, A. J., Aldawood, M., Zaid, A. A., Aldehneen, H., Aldrees, R., Alsalem, A., Albattat, S., & Mutair, A. S. A. (2024) · Heliyon · doi:10.1016/j.heliyon.2024.e34283
“In addition, psychological challenges are widespread among the public, and studies indicate that levels of depression are particularly elevated among caregivers of children with cancer [15,16].”
BackgroundAssessing Analgesic Adherence and Influencing Factors in Saudi Cancer Patients
Algthami, T., & Kattan, W. (2024) · International Journal of Cancer Management · doi:10.5812/ijcm-144599
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051336
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051309
Bijnsdorp, F. M., Pasman, H. R. W., Boot, C. R. L., van Hooft, S. M., van Staa, A., & Francke, A. L. (2020) · Figshare · doi:10.6084/m9.figshare.12172242
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051303
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051342
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051324
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051333
Watanabe, K., Katayama, K., Yoshioka, T., & Narimatsu, H. (2020) · Figshare · doi:10.6084/m9.figshare.12051318
Compétences émotionnelles et besoins en soins de support des proches-aidants en oncologie
Baudry, A. (2019) · theses.fr (ABES) · doi:10.70675/b465f764z1c06z4615z8396z34681493ee98
Brandstetter, L., Grau, A., Löffler, J., Müller-Reiter, M., Salmen, J., Reese, J., Heuschmann, P., & Wöckel, A. (2026) · Supportive Care in Cancer · doi:10.1007/s00520-026-10672-4
“A study from Iceland on 223 relatives of cancer patients (various stages) receiving chemotherapy not only assessed the needs in terms of caring for their loved one, but also the QoL, anxiety, and depression of the relatives [12].”
Khodaparast, Z., Sadighi, G., Vahedi, M., & Alikhani, R. (2026) · Geopsychiatry · doi:10.1016/j.geopsy.2026.100104
Prevalence of Depression and Anxiety among Caregivers of Cancer Patients: A Cross-Sectional Study
Prasad, K. S., Krishna, J. M., Kornapalli, S. E., & Prakash, C. S. K. (2026) · International Journal of Science and Healthcare Research · doi:10.52403/ijshr.20260305
de Jesus, E. E. D., Carminatti, M., Bertuol, C., Matos, J. B., & Freitas, C. D. L. R. (2026) · Pensar en Movimiento Revista de Ciencias del Ejercicio y la Salud · doi:10.15517/1fr1aw21
Care for carers: an investigation on family caregivers' needs, tasks, and experiences
Zavagli, V., Raccichini, M., Ercolani, G., Franchini, L., Varani, S., & Pannuti, R. (2019) · Universita' degli Studi di Salerno · doi:10.14273/unisa-2723 · Cited by 36
Metadata
- Authors
- Friðriksdóttir, N., Sævarsdóttir, Þ., Halfdánardóttir, S. Í., Jónsdóttir, A., Magnúsdóttir, H., Ólafsdóttir, K. L., Guðmundsdóttir, G., & Gunnarsdóttir, S.
- Affiliations
- National University Hospital of Iceland (IS)
- University of Iceland (IS)
- Venue
- Acta Oncologica
- Published
- 2011-01-13
- Volume
- 50
- Issue
- 2
- Pages
- 252-258
- ISSN
- 0284-186X (ISSN-L)
- 1651-226X
- OpenAlex
- W2028993037
- Cited by
- 196
- References
- 23
- Citations by year
- 2026: 5 · 2025: 3 · 2024: 16 · 2023: 10 · 2022: 21 · 2021: 18 · 2020: 21 · 2019: 12 · 2018: 16 · 2017: 11 · 2016: 13 · 2015: 15 · 2014: 10 · 2013: 10 · 2012: 11
- FWCI
- 5.49
- Type
- journal article
- Language
- en
- Open access
- diamond
- doi.org
- Locations
- Acta Oncologica (publishedVersion)
- PubMed (publishedVersion)
- Hirsla (Landspítali University Hospital) (submittedVersion)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Psychology › Clinical Psychology › Family Support in Illness
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Keywords
- family caregivers, relatives of cancer patients, unmet needs, quality of life, anxiety, depression, psychological distress, metastatic cancer, gender differences, spousal caregivers, disease duration
- MeSH terms
- Adult, Aged, Aged, 80 and over, Anxiety, Cross-Sectional Studies, Depression, Family, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Neoplasms, Quality of Life, Surveys and Questionnaires, Caregivers
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