Factors Associated with Caregiver Burden among Caregivers of Terminally Ill Patients with Cancer
Abstract
Objective To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer. Design Cross-sectional study of interviews with primary caregivers (n = 206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut. Methods Data were collected on the caregivers' sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory. Results The highest burden was reported among caregivers with more limited social networks (OR 1.38, Cl 1.02-1.87), more restrictions in their daily activities (OR 1.35, Cl 1.13-1.61), and who were younger (OR 1.46, Cl 1.10-1.93). Conclusions Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.
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A limitation of the study is that not all factors found to contribute to caregiver burden in other studies were studied, such as the social network index of caregivers and their activity restriction.
“A limitation of the study is that we did not study all factors that had been found to contribute to CB in other studies like the social network index of caregivers and their activity restriction [28].”
From Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries (2021) · cites this paper as [28]
Goldstein et al. found no significant association between the number of activities of daily living caregivers assist with and higher caregiver burden.
“Goldstein et al. included in their study caregivers of patients with terminal cancer and found no significant association between the number of ADLs the caregivers assist with and higher CB [28].”
From Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries (2021) · cites this paper as [28]
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BackgroundInfluentialMindful Caring: Using Mindfulness-Based Cognitive Therapy With Caregivers of Cancer Survivors
Wood, A. W., Gonzalez, J., & Barden, S. M. (2014) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2014.977418 · Cited by 38 · see citing works
“Research on individuals who feel less subjective burden (Goldstein et al., 2004; Hoenig & Hamilton, 1966; Rhee et al., 2008) can influence future treatment considerations for individuals who feel more subjective burden.”
Coping with colorectal cancer: a qualitative exploration with patients and their family members.
Asiedu, G. B., Eustace, R., Eton, D., & Breitkopf, C. R. (2014) · Family Practice · doi:10.1093/fampra/cmu040 · Cited by 36
Akgul, N., & Özdemir, L. (2014) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2014.03.013 · Cited by 33 · see citing works
“…ZBI was constructed for the elderly, there have also been several published articles regarding burden of cancer caregivers using this interview (Goldstein et al., 2004; Grunfeld et al., 2004; Higginson and Gao, 2008; Papastavrou et al., 2009; Yusuf et al., 2011; Turkoglu and Kilic, 2012;…”
Caregiver's burden and quality of life: caring for physical and mental illness
Settineri, S., Rizzo, A., Liotta, M., & Mento, C. (2014) · International journal of psychological research · doi:10.21500/20112084.665 · Cited by 50 · see citing works
Rodríguez‐Sánchez, E., Patino-Alonso, M. C., Mora‐Simón, S., Gómez-Marcos, M. Á., Peñaranda, A. P., Losada‐Baltar, A., & García‐Ortiz, L. (2012) · The Gerontologist · doi:10.1093/geront/gns086 · Cited by 31 · see citing works
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 · see citing works
“included in their study caregivers of patients with terminal cancer and found no significant association between the number of ADLs the caregivers assist with and higher CB [28].”
BackgroundProgram Preferences to Reduce Stress in Caregivers of Patients With Brain Tumors
Swartz, J. J., & Keir, S. T. (2007) · Clinical journal of oncology nursing · doi:10.1188/07.cjon.723-727 · Cited by 28 · see citing works
“Studies have documented that age, educational level, and ability to participate in valued activities play a role in caregivers’ levels of emotional stress (Burns, Tanner, Preece, & Cameron, 1981; Goldstein et al., 2004; Sansoni, Vellone, & Piras, 2004).”
BackgroundDevelopment of an instrument to measure self‐efficacy in caregivers of people with advanced cancer
Ugalde, A., Krishnasamy, M., & Schofield, P. E. (2012) · Psycho-Oncology · doi:10.1002/pon.3160 · Cited by 30 · see citing works
Levels, Types, and Predictors of Family Caregiver Strain During Hospice Home Care for an Older Adult
Townsend, A. L., Ishler, K. J., Shapiro, B. M., Pitorak, E. F., & Matthews, C. R. (2010) · Journal of Social Work in End-of-Life & Palliative Care · doi:10.1080/15524256.2010.489222 · Cited by 25 · see citing works
“Our results are consistent with studies that find higher strain in younger caregivers (e.g., Dumont et al., 2006; Goldstein et al., 2004).”
BackgroundResultInfluentialFamily Caregivers to Adults with Cancer: The Consequences of Caring
Williams, A.-L. (2017) · Recent results in cancer research/Recent Results in Cancer Research · doi:10.1007/978-3-319-64310-6_6 · Cited by 26 · see citing works
Family Perceptions of Clinicians’ Outstanding Practices in End-of-Life Care
Cherlin, E. J., Schulman‐Green, D., McCorkle, R. C., Johnson‐Hürzeler, R., & Bradley, E. H. (2004) · Journal of Palliative Care · doi:10.1177/082585970402000208 · Cited by 30 · see citing works
Self-citationSykes, K. J., Morrow, E., Smith, J. B., Holcomb, A., Tennapel, M., Lominska, C., Bur, A., & Kakarala, K. (2020) · Head and Neck · doi:10.1002/hed.26355 · Cited by 26 · see citing works
“Caregiver mental and emotional well-being often suffers in parallel with patients, although strong social support may mitigate these effects.(43,44) Despite the critical nature of this support, discussions of delays or breaks in treatment have not routinely included the role of social support.”
BackgroundFamily caregiver's experiences in caring for a patient with terminal cancer at home in Japan
Sano, T., Maeyama, E., Kawa, M., Shirai, Y., Miyashita, M., Kazuma, K., & Okabe, T. (2007) · Palliative & Supportive Care · doi:10.1017/s1478951507000582 · Cited by 26 · see citing works
“Most research on home care emphasizes the magnitude of the mental and physical stress imposed on the family in whose midst caring takes place (Given et al., 2004; Goldstein et al., 2004).”
BackgroundHuang, Y., Mao, B., Ni, P., Shou, Y., Ye, J., Hou, L., & Xie, T. (2019) · Advances in Wound Care · doi:10.1089/wound.2018.0873 · Cited by 25 · see citing works
Kemp, E., Prior, K. N., Beatty, L., Lambert, S., Brown, C. S. B., & Koczwara, B. (2018) · European Journal of Cancer Care · doi:10.1111/ecc.12875 · Cited by 26 · see citing works
Vashistha, V., Poulose, R., Choudhari, C., Kaur, S., & Mohan, A. (2019) · Asian Pacific Journal of Cancer Care · doi:10.31557/apjcc.2019.4.3.87-93 · Cited by 22 · see citing works
“found no differences in ZBI scores based on household income among caregivers of terminally-ill cancer patients admitted to an inpatient hospice facility in Connecticut [16].”
BackgroundInfluentialKim, H.-H., Kim, S., Kim, J., Kim, S., Shin, I., Shim, H., Hwang, J., Chung, I., & Yoon, J. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951515000073 · Cited by 30 · see citing works
“…visits from other family members, poor family functioning, low self-esteem, low monthly income, low level of social support, physical health problems, anxiety, and depression (Given et al., 2004; Grov et al., 2006; Teixeira & Pereira, 2013; Goldstein et al., 2004; Park et al., 2012; Andrews, 2001).”
BackgroundMethodLiving 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 · see citing works
“Although the care provided to patients with common terminal cancers by family caregivers and the high burden experienced by caregivers has been well documented (Goldstein et al., 2004; Janze & Henriksson, 2014; Mori et al., 2012), little focus has been given to family caregivers of patients with HCC and their perspect…”
Background[Experiences of family caregivers of patients with terminal cancer].
Choi, E., & Kim, K.-S. (2012) · Journal of Korean Academy of Nursing · doi:10.4040/jkan.2012.42.2.280 · Cited by 21
“말기 암환자 가족들은 환자 상태의 지속적 악화로 일상생활 활 동을 전적으로 돌봐주어야 하는 것에 대한 부담이 있고(Ahn & Lee, 2005), 환자 간호시 긴장이 지속됨으로써 속쓰림, 소화불량 등 위장 관계 증상과 피로와 수면부족(Kim & Choi, 2000) 등 신체적 문제를 경험하며 환자 돌봄으로 인해 사회적 관계가 위축되고 변하게 된다 (Goldstein et al., 2004).”
Reconciling employment with caring for a husband with an advanced illness
Gysels, M., & Higginson, I. (2009) · BMC Health Services Research · doi:10.1186/1472-6963-9-216 · Cited by 21
“Employment for women is increasing and this means that both men and women will combine these roles [13,14].”
Family Experiences in End-of-Life Care: A Literature Review.
Yoo, J., Lee, J., & Chang, S. (2008) · Asian Nursing Research · doi:10.1016/s1976-1317(09)60004-9 · Cited by 21 · see citing works
“Overall, the burden was more prevalent in families of patients with multiple symptoms or higher activities of daily living needs and in families with more limited social networks (Andrew, 2001; Chang & Lee, 2000; Chung & Kim, 2003; Given et al., 2005; Goldstein et al., 2004).”
BackgroundBURDEN AMONG FAMILY CAREGIVERS OF ADVANCED-CANCER PATIENTS IN INDONESIA
Sari, I. W. W., Warsini, S., & Effendy, C. (2018) · Belitung Nursing Journal · doi:10.33546/bnj.479 · Cited by 20 · see citing works
“There have been various studies into the family caregivers’ experiences in taking care of advanced-cancer patients conducted in Asia and America (Effendy et al., 2015; Goldstein et al., 2004; Rha et al., 2015).”
BackgroundResultInfluentialGrov, E. K., & Valeberg, B. T. (2012) · Palliative & Supportive Care · doi:10.1017/s1478951511000873 · Cited by 22 · see citing works
Agyemang‐Duah, W., & Rosenberg, M. W. (2024) · BMC Family Practice · doi:10.1186/s12875-024-02562-7 · Cited by 17 · see citing works
Caregiver Burden Varies by Sensory Subtypes and Sensory Dimension Scores of Children with Autism
Hand, B. N., Lane, A. E., de Boeck, P. A. L., Basso, D. M., Nichols‐Larsen, D. S., & Darragh, A. R. (2017) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-017-3348-1 · Cited by 19 · see citing works
“Age of the caregiver, age of the child, household income, and number of children in the household were included as covariates due to the established influence that these variables have on caregiver burden in other populations (Goldstein et al. 2004; Hastings 2002; Liu et al. 2007; Nabors et al. 2002).”
Effects of online yoga and tai chi on physical health outcome measures of adult informal caregivers
Candow, D. G., & Martin, A.-C. (2018) · International Journal of Yoga · doi:10.4103/ijoy.ijoy_5_18 · Cited by 18 · see citing works
“As the literature has developed on informal caregivers, further predictor variables for health problems have been identified, such as caregiver age, sex, relationship to the care recipient,[55‐57] ethnicity,[58] social isolation,[59,60] and weekly hours of informal caregiving.”
BackgroundVulnerable characteristics and interest in wellness programs among head and neck cancer caregivers
Nightingale, C. L., Sterba, K. R., Tooze, J. A., Milliron, B., Tetrick, L. A., Paek, M.-S., & Weaver, K. E. (2016) · Supportive Care in Cancer · doi:10.1007/s00520-016-3160-z · Cited by 18 · see citing works
“Multiples studies have observed that lower SES (lower income and less education) [11, 12], younger age [13], spendingmore time on caregiving tasks [11], and being a spousal caregiver [14] are associated with greater burden and health problems among cancer caregivers.”
BackgroundPsychosocial Burden of Family Caregivers to Adults with Cancer
Williams, A.-L. (2013) · Recent results in cancer research/Recent Results in Cancer Research · doi:10.1007/978-3-642-40187-9_6 · Cited by 15 · see citing works
Alshammari, B., Noble, H. R., McAneney, H., & O’Halloran, P. D. (2019) · BMC Nephrology · doi:10.1186/s12882-019-1424-9 · Cited by 17 · see citing works
Factors Associated with Care Burden among Family Caregivers of Terminally Ill Cancer Patients
Lee, J. H., Park, H., Hwang, I. C., Kim, H. M., Koh, S., Kim, Y. S., Lee, Y. J., Choi, Y. S., Hwang, S. W., & Ahn, H. Y. (2016) · The Korean Journal of Hospice and Palliative Care · doi:10.14475/kjhpc.2016.19.1.61 · Cited by 15 · see citing works
Prevalence of irritable bowel syndrome in caregivers of patients with chronic diseases
Remes-Troche, J. M., Torres-Aguilera, M., Montes-Martínez, V., Jimenez-Garcia, V. A., & Roesch-Dietlen, F. (2015) · Neurogastroenterology & Motility · doi:10.1111/nmo.12556 · Cited by 19 · see citing works
- Authors
- Goldstein, N. E., Concato, J., Fried, T. R., Kasl, S. V., Johnson-Hurzeler, R., & Bradley, E. H.
- Affiliations
- Yale University (US)
- Connecticut Hospice, Branford
- Venue
- Journal of Palliative Care
- Publisher
- SAGE Publications
- Published
- 2004-03
- Volume
- 20
- Issue
- 1
- Pages
- 38-43
- ISSN
- 0825-8597 (ISSN-L)
- 2369-5293
- OpenAlex
- W16285977
- Cited by
- 190
- References
- 0
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 3 · 2023: 5 · 2022: 7 · 2021: 10 · 2020: 8 · 2019: 11 · 2018: 7 · 2017: 8 · 2016: 8 · 2015: 14 · 2014: 14 · 2013: 4 · 2012: 16
- FWCI
- 8.19
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Palliative Care (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institute on Aging (K02AG20113, K02AG020113, P30 AG21342, P30AG021342)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- caregiver burden, terminal cancer, hospice care, family caregivers, social support networks, activity limitation, Zarit Burden Inventory, sociodemographic factors, young carers
- MeSH terms
- Activities of Daily Living, Adaptation, Psychological, Adult, Aged, Aged, 80 and over, Analysis of Variance, Attitude to Health, Connecticut, Cross-Sectional Studies, Family, Female, Humans, Male, Middle Aged, Neoplasms, Quality of Life, Surveys and Questionnaires, Social Support, Socioeconomic Factors, Stress, Psychological, Logistic Models, Caregivers, Hospice Care, Cost of Illness, Needs Assessment
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