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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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“Moderate/high level of unmet needs were particularly common in carers of younger age and this corresponds with the existing survivorship and palliative care literature [19,30].”
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“(n=223) found that 57 % of the caregivers rated ‘have someone be concerned with my health’ as an important need, and 47 % of the caregivers felt that their need was not met [18].”
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“Discussion Family caregivers of cancer patients show high rates of psychological distress (M. Braun et al., 2007; Fridriksdóttir et al., 2011), but typically underuse mental health services (Mosher et al., 2013a; Vanderwerker et al., 2005).”
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“It has also been suggested that caregivers who are not working have more unmet needs than caregivers who are currently working,(13) while another study stated that working caregivers have more unmet needs than non working caregiver.(20) It has also been suggested that caregivers with higher incomes have fewer unmet ne…”
BackgroundPsychological distress, social support, and quality of life among cancer caregivers in Albania
Burnette, D., Duci, V., & Dhëmbo, E. (2016) · Psycho-Oncology · doi:10.1002/pon.4081 · Cited by 61
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“Moreover, adaptive caregivers exhibit a higher degree of PSRC and, expectedly, a lower degree of NSRC, compared with their maladaptive counterparts.(3,8) A recent quasi‐ experimental study including 42 mothers of children diagnosed with cancer has shown a significant difference between anxiety symptoms in a group subm…”
BackgroundResultPsychometric properties of carer-reported outcome measures in palliative care: A systematic review
Michels, C. T. J., Boulton, M. G., Adams, A., Wee, B. L., & Peters, M. (2015) · Palliative Medicine · doi:10.1177/0269216315601930 · Cited by 51
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“Fridriksdottir et al. (2011) have studied QOL, anxiety, and depression in family members of cancer patients and found high prevalence of anxiety and depression.”
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Clark, M. M., Atherton, P. J., Lapid, M. I., Rausch, S. M., Frost, M. H., Cheville, A. L., Hanson, J. M., Garces, Y. I., Brown, P. D., Sloan, J. A., et al. (2013) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909113479153 · Cited by 48
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“Support needs can change during the illness trajectory and unmet needs may negatively affect family caregivers’ QoL [17, 18].”
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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).”
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“The diagnosis of a significant other is associated with a lower quality of life [14], increased distress [15,16], depression, and anxiety [17,18].”
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Kim, Y., Carver, C. S., & Ting, A. (2019) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2019.06.012 · Cited by 36
Rehabilitation of cancer patients: Needed, but how?
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“Cancer affects not only patients but also their close relatives [39], and unmet needs among family members of cancer patients were associated with anxiety and reduced quality of life [40].”
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ResultWang, 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
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“Family members, who often assume caregiving roles to complement the roles of the health care team, often experience deteriorating quality of life and significant psychological distress [7,8].”
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Cancer caregivers unmet needs and emotional states across cancer treatment phases
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“We chose these time periods as they were critical to FCCs’ psychological health [19, 20, 23, 24].”
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“, 2007), higher caregiving burden (Valizadeh, Joonbakhsh, & Pashaee, 2014), and poorer quality of life compared with general population (Friðriksdóttir et al., 2011; Heidari Gorji et al., 2012; Klassen et al., 2008; Sajjadi et al., 2011; Song et al., 2011; Tamayo, Broxson, Munsell, & Cohen, 2010).”
BackgroundReliability and Validity of Turkish Version of the Caregiver Quality of Life Index Cancer Scale
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Westendorp, J., Geerse, O. P., van der Lee, M. L., Schoones, J. W., van Vliet, M. H. M., de Wit, T. F. R., Evers, A. W. M., & van Vliet, L. M. (2023) · Psycho-Oncology · doi:10.1002/pon.6247 · Cited by 32
“29 For example, family caregivers perceive deficits in receiving understandable information and being informed about who could help them with problems.”
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Kishita, N., Gould, R. L., Farquhar, M., Contreras, M., Van Hout, E., Losada, A., Cabrera, I., Hornberger, M., Richmond, E., & McCracken, L. M. (2022) · Aging & Mental Health · doi:10.1080/13607863.2021.1985966 · Cited by 30
“The prevalence estimate of anxiety is substantially greater than family carers of people with other conditions such as cancer (Friðriksdóttir et al., 2011) and stroke (Loh et al.”
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“A few previous studies have demonstrated more depression in younger age group.[24]”
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“Commonly reported associations include female gender, younger age, spousal relationship to care recipient, high perceived caregiver burden, high impact of caregiving on schedule and finances, familial conflict, poor patient performance status, a longer time since diagnosis, lung cancer diagnosis, and palliative treatm…”
BackgroundStenberg, U., Ekstedt, M., Olsson, M., & Ruland, C. M. (2014) · Journal of Gerontological Social Work · doi:10.1080/01634372.2014.881450 · Cited by 33
“For example, researchers suggest that family caregivers should be assessed for sleep disturbance, depression, anxiety, needs, and burden (Cora et al., 2012; Francis et al., 2010; Friðriksdóttir et al., 2011; Hearson et al., 2011).”
BackgroundHigh psychosocial burden in relatives of malignant brain tumor patients
Stieb, S., Fischbeck, S., Wagner, W., Appels, J., & Wiewrodt, D. (2018) · Clinical Neurology and Neurosurgery · doi:10.1016/j.clineuro.2018.04.023 · Cited by 27
Caregiver Burden and Depression Among Chinese Family Caregivers: the Role of Self-compassion
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Psychological distress and loneliness in caregiver of advanced oncological inpatients
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“Recent studies suggested that female caregivers report higher anxiety and depression levels than men (Friðriksdóttir et al., 2011).”
BackgroundLavallée, J. F., Grogan, S., & Austin, C. A. (2018) · Health Education Journal · doi:10.1177/0017896918812511 · Cited by 27
“Assisting family members to feel satisfied that their own needs have been met may enable families to feel more capable of supporting the patient (Friðriksdottir et al., 2011).”
BackgroundWang, Y., Yan, J., Chen, J., Wang, C., Lin, Y., Wu, Y., & Hu, R. (2021) · Quality of Life Research · doi:10.1007/s11136-021-02785-6 · Cited by 25
Kirby, L. A. J., Zolkoski, S. M., O'Brien, K. H., Mathew, J., Kennedy, B., & Sass, S. M. (2022) · Journal of Happiness and Health · doi:10.47602/johah.v3i1.31 · Cited by 28
“Internal reliability as assessed by inter-item correlations ranged from .82-.92 (Burckhardt et al., 1989); subsequent research found Cronbach’s alphas of .82-.92 (Anderson, 1995; Archenholtz et al., 1999; Friðriksdóttir et al., 2011; Neumann & Buskila, 1997; Wahl et al., 1998).”
Abdel-Aziz, A. L. (2017) · American Journal of Nursing Science · doi:10.11648/j.ajns.20170604.18 · Cited by 24
“On the other hand this finding was contradicted with Óttir et al (2011) [59] they concluded that younger family members had a higher mean number of needs than older ones.”
ResultZavagli, 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
Baudry, A., Anota, A., Bonnetain, F., Mariette, C., & Christophe, V. (2018) · European Journal of Cancer Care · doi:10.1111/ecc.12896 · Cited by 24
Assessing needs of family members of inpatients with advanced cancer
Bužgová, R., Špatenková, N., Fukasová, E. H., & Feltl, D. (2016) · European Journal of Cancer Care · doi:10.1111/ecc.12441 · Cited by 23
Arian, M., Younesi, S. J., & Khanjani, M. S. (2017) · International Journal of Cancer Management · doi:10.5812/ijcm.10753 · Cited by 22
“Hence, screening the needs and psychological pressures among family members of cancer patients is a vital and important matter in all the phases of this disease (5).”
BackgroundChristophe, V., Anota, A., Vanlemmens, L., Cortot, A. B., Ceban, T., Piessen, G., Charton, É., & Baudry, A. (2022) · Supportive Care in Cancer · doi:10.1007/s00520-022-07379-7 · Cited by 22
“This result is in line with several studies showing more unmet needs in palliative settings [11, 14, 16].”
ResultAnxiety and Depression Associated With Burden in Caregivers of Patients With Brain Metastases
Saria, M. G., Courchesne‐Krak, N. S., Evangelista, L. S., Carter, J. L., MacManus, D., Gorman, M. K., Nyamathi, A., Phillips, L. R., Piccioni, D. E., Kesari, S., et al. (2017) · Oncology nursing forum · doi:10.1188/17.onf.306-315 · Cited by 22
“Research reports have consistently described the high prevalence of anxiety and depression among cancer caregivers (Friðriksdóttir et al., 2011), noting that these symptoms can vary along the illness trajectory (Song et al.”
BackgroundChantarasap, P., Johns, N. P., Pairojkul, S., Sookprasert, A., Wirasorn, K., Cheawchanwattana, A., Salek, S., & Subongkot, S. (2019) · Health and Quality of Life Outcomes · doi:10.1186/s12955-019-1091-3 · Cited by 22
“Study also shows that most family members needs are not met by healthcare services, resulting in distress and anxiety [4].”
BackgroundDiagnosis as the First Critical Point in the Treatment Trajectory
Missel, M., Pedersen, J. H., Hendriksen, C., Tewes, M., & Adamsen, L. (2014) · Cancer Nursing · doi:10.1097/ncc.0000000000000209 · Cited by 20
Aubin, M., Vézina, L., Verreault, R., Simard, S., Desbiens, J., Tremblay, L., Dumont, S., Fillion, L., Dogba, M. J., & Gagnon, P. R. (2017) · Trials · doi:10.1186/s13063-017-2044-y · Cited by 21
“It is recommended to assess FC distress and needs early after diagnosis, and to reassess them regularly with cancer progression [26, 27] in order to support them and help them play their role in patient assistance and ongoing care throughout the care trajectory.”
BackgroundMøller, J. K., Jespersen, E., Lindahl‐Jacobsen, R., & Ahrenfeldt, L. J. (2019) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2019.1664699 · Cited by 19
Hoffmann, R., Große, J., Nagl, M., Niederwieser, D., Mehnert, A., & Kersting, A. (2018) · BMC Psychiatry · doi:10.1186/s12888-018-1633-y · Cited by 18
“During the time of illness significant others of cancer patients show high distress with prevalence rates of 20 to 46% for depression and anxiety [15, 16], and lower health-related quality of life than the general population, especially if cancer is advancing [17].”
BackgroundPailler, M. E., Johnson, T. M., Zevon, M. A., Kuszczak, S. M., Griffiths, E. A., Thompson, J. E., Wang, E. S., & Wetzler, M. (2015) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2014.992086 · Cited by 18
“In addition, caregiver distress and poor quality of life have been linked with perceptions of unmet needs (Friethriksdottir et al., 2011), and caregivers in the intervention group may have felt more prepared to address the challenges faced at home.”
BackgroundSchur, S., Ebert‐Vogel, A., Amering, M., Masel, E. K., Neubauer, M., Schrott, A., Sibitz, I., Watzke, H., & Schrank, B. (2014) · Supportive Care in Cancer · doi:10.1007/s00520-014-2272-6 · Cited by 18
Sjölander, C., Hedberg, B., & Ahlström, G. (2011) · BMC Nursing · doi:10.1186/1472-6955-10-18 · Cited by 18
“There are often symptoms of anxiety, sadness and depression in family members of persons with cancer [4,5].”
Quality of life in caregivers of patients with multiple myeloma
Pereira, M. G., Vilaça, M., Pinheiro, M., Ferreira, G., Pereira, M., Faria, S., Monteiro, S., & Bacalhau, R. (2020) · Aging & Mental Health · doi:10.1080/13607863.2019.1617240 · Cited by 18
Lee, J. W., Lee, J., Lee, M. H., Lee, S. K., Kim, W. S., Jung, S.-Y., Kim, Z., Lee, J. H., Youn, H. J., & (SMARTSHIP), S. O. M.-D. T. O. B. C. S. (2021) · Annals of Surgical Treatment and Research · doi:10.4174/astr.2021.101.2.69 · Cited by 16
“The employed caregivers expressed greater needs for family/ social support and religious support than the unemployed group, and this result supports previous research which reported that currently working family members have higher unmet needs [21].”
Çal, A., Avci, İ. A., & Çavuşoğlu, F. (2017) · Asia-Pacific Journal of Oncology Nursing · doi:10.4103/apjon.apjon_11_17 · Cited by 15
Wang, Y., Seplaki, C. L., Norton, S. A., Williams, A. M., Kadambi, S. G., & Loh, K. P. (2024) · Current Oncology Reports · doi:10.1007/s11912-024-01550-5 · Cited by 18
“…characteristics associated with negative communication experiences included female sex [8, 16, 59], youth and middle age (e.g., 50 years of age) [8, 22, 48, 59, 70], non-spouses (e.g., children or siblings) [8, 22], active work status [8, 70], rural residence [22], and having children younger…”
InfluentialPsychoonkologische Unterstützung von Patienten und Angehörigen in der Terminalphase
Mehnert, A., & Vehling, S. (2017) · Forum · doi:10.1007/s12312-017-0363-2 · Cited by 15
Hoffstädt, H. E., Boogaard, J. A., Tam, M. C., van Bodegom‐Vos, L., Brinkman‐Stoppelenburg, A., Hartog, I. D., van der Linden, Y. M., & van der Steen, J. T. (2022) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091221123006 · Cited by 14
“Internal support services Spiritual counsellor 206 (55) Social worker 200 (54) Palliative consultation team 157 (42) Psychologist 84 (23) Other internal support services 52 (14) “I do not refer to internal support services” 44 (12) External support services General practitioner 234 (63) Walk-in consultation services 5…”
BackgroundVerma, M., Horrow, J. C., Carmody, S., & Navarro, V. J. (2023) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091231176297 · Cited by 14
Wang, T.-F., Li, Y.-J., Chen, L.-C., Chou, C., & Yang, S.-C. (2018) · Cancer Nursing · doi:10.1097/ncc.0000000000000677 · Cited by 14
Depression and Quality of Life Among Caregivers of Pediatric Cancer Patients
Alaqeel, M., Alkhathaami, F., Alshangiti, A., Alanazi, A., Alothri, M. A., Alqarni, A. T., Almahmoud, F. I., & Masuadi, E. (2022) · Cureus · doi:10.7759/cureus.24256 · Cited by 14
Interventions improving well‐being of adult cancer patients’ caregivers: A systematic review
Sak‐Dankosky, N., Sherwood, P. R., Vehviläinen-Julkunen, K. M., & Kvist, T. A. (2022) · Journal of Advanced Nursing · doi:10.1111/jan.15320 · Cited by 14
Mojen, L. K., Rassouli, M., Ashrafizadeh, H., Zadeh, E. F., Dadashi, N., Khoshnazar, T. A. K., Pourazarhagh, P., & Nasrabadi, T. (2022) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.964424 · Cited by 14
“In line with these results, previous studies conducted in other populations likewise pointed to the multiple needs of mothers of children with cancer, and the rate of need dis satisfaction was reported to be 22–56% (Friðriksdóttir et al., 2011; Arabiat and Altamimi, 2013; Aziza et al., 2019; Lyu et al., 2019).”
BackgroundResultD’Souza, V., Blouin, E., Zeitouni, A. G., Müller, K., & Allison, P. J. (2016) · European Journal of Cancer Care · doi:10.1111/ecc.12440 · Cited by 14
Cuthbert, C. A., Culos-Reed, S. N., King‐Shier, K. M., Ruether, J. D., Bischoff, M., & Tapp, D. M. (2017) · European Journal of Cancer Care · doi:10.1111/ecc.12684 · Cited by 16
Effects of Reflexology on Sleep Quality of Elderly Women Undergoing Abdominal Surgery
Kheyri, A., Bastani, F., & Haghani, H. (2016) · Journal of Client-centered Nursing Care · doi:10.32598/jccnc.2.1.11 · Cited by 13
“The reliability of this test in Iran calculated by the Cronbach α (n=34) has been reported as 78% (Friethriksdottir et al. 2011).”
Thompson, D. J., Weissbecker, I., Cash, E. D., Simpson, D. M., Daup, M., & Sephton, S. E. (2015) · Applied Psychophysiology and Biofeedback · doi:10.1007/s10484-015-9270-4 · Cited by 13
The relationship between hope levels and unmet needs of caregivers of advanced cancer patients†
Altınışık, M., KOCABIYIK, B. Ç., Arıkan, F., Şevik, H. Y., & Çoşkun, H. Ş. (2022) · Japan Journal of Nursing Science · doi:10.1111/jjns.12482 · Cited by 12
Huynh, T. N. T., Härtel, G., Janda, M., Wyld, D., Merrett, N. D., Gooden, H. M., Neale, R. Ε., & Beesley, V. L. (2023) · Cancers · doi:10.3390/cancers15225307 · Cited by 12
“…with a higher number of unmet carer needs was in line with previous reports for Icelandic carers for patients with various types of cancer [30], and our finding that patients’ anxiety and depression were associated with a higher number of unmet carer needs was in line with previous reports…”
ResultMunie, B. M., Birhan, Z., Legas, G., Asnakew, S., Belete, A., Beyene, G. M., Shiferaw, K., Mulu, A. T., Kassie, Y. T., Munye, T., et al. (2024) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2024.1422104 · Cited by 11
“These professionals exclude them from the disease, treatment, and decision-making processes and do not consider their needs; hence, families do not have a chance to express their concerns and needs, and are at risk of serious psychological problems (29).”
BackgroundZhou, S., Zhao, Q., Weng, H., Wang, N., Wu, X., Li, X., & Zhang, L. (2021) · BMC Palliative Care · doi:10.1186/s12904-021-00766-7 · Cited by 11
Exploring Gender Differences in Self-Reported Physical Activity and Health Among Older Caregivers
Cuthbert, C., King-Shier, K., Tapp, D., Ruether, D., & Culos-Reed, S. (2017) · Oncology Nursing Forum · doi:10.1188/17.onf.435-445 · Cited by 12
“Systematic reviews and meta-analyses (Northouse, Williams, Given, & McCorkle, 2012; Pinquart & Sörenson, 2006a) have revealed the detrimental impact of caregiving on physical and mental health (Friðriksdóttir et al., 2011; Ji, Zoller, Sundquist, & Sundquist, 2012; Rivera, 2009; Schulz & Beach, 1999).”
Background
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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