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Cited by 374Nursing care and researchCancer survivorship and careIntergenerational Family Dynamics and Caregiving

Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?

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van Ryn, Michelle, Sanders, Sara, Kahn, Katherine, van Houtven, Courtney, Griffin, Joan M., Martin, Michelle, Atienza, Audie A., Phelan, Sean +2 more·2011·Psycho-Oncology
DOI 10.1002/pon.1703PMC PMC4479404
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Abstract

A great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands. Background : Changes in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients. Methods : Caregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self‐administered questionnaires ( n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care. Results : Over half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer‐specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided. Conclusions : Much assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes. Copyright © 2010 John Wiley & Sons, Ltd.

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  • Caring for another person generates a complex scenario of suffering, tension, anxiety, fear, and pain, with changes in social interaction and physical or psychological well-being, which can alter the caregiver's perception of burden.

    “Sin embargo, la acción de cuidar a otro genera un escenario complejo, de sufrimiento, tensión, ansiedad, temor y dolor, con cambios relacionados con su interacción social y bienestar físico o psicológico, lo que puede alterar la percepción de sobrecarga de este cuidador por el servicio que presta (7-9).”

    From Factores relacionados con sobrecarga del cuidador informal de pacientes con cáncer avanzado (2024) · cites this paper as [8]

    The Discussion (page unavailable) links cancer caregiving demands and limited social resources to risks of strain, poor mental health, and diminished quality of life. It does not specifically describe anxiety, fear, pain, or suffering, or show that these experiences alter caregivers’ perception of burden. The paper concerns informal caregivers of people with lung or colorectal cancer, rather than caregiving in general. (LLM, conf=0.83)

    Experimental — accuracy not yet measured

  • The informal caregiver is a key figure for facing the impact of the disease on the patient and becomes the main provider of care at home.

    “El cuidador informal es una figura clave para enfrentar el impacto de la enfermedad en el paciente, y este se convierte en el principal proveedor de cuidado en el hogar (5).”

    From Factores relacionados con sobrecarga del cuidador informal de pacientes con cáncer avanzado (2024) · cites this paper as [5]

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Cited by

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Authors
van Ryn, M., Sanders, S., Kahn, K., van Houtven, C., Griffin, J. M., Martin, M., Atienza, A. A., Phelan, S., Finstad, D., & Rowland, J.
Affiliations
  • University of Iowa (US)
  • University of California, Los Angeles (US)
  • University of Minnesota (US)
  • National Institutes of Health (US)
ORCID
Venue
Psycho-Oncology
Publisher
Wiley
Published
2010-12-22
Volume
20
Issue
1
Pages
44-52
ISSN
  • 1057-9249 (ISSN-L)
  • 1099-1611
DOI
10.1002/pon.1703
PMC
PMC4479404
OpenAlex
W2081943263
Cited by
374
References
6
Citations by year
2026: 10 · 2025: 16 · 2024: 23 · 2023: 21 · 2022: 23 · 2021: 31 · 2020: 37 · 2019: 33 · 2018: 24 · 2017: 26 · 2016: 27 · 2015: 26 · 2014: 24 · 2013: 16 · 2012: 24
FWCI
38.29
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Psycho-Oncology (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • U.S. Department of Veterans Affairs (CRS 02-164)
  • National Institutes of Health (5u01ca093344-08)
  • National Cancer Institute (U01CA93332, CRS 02-164, U01CA093339, U01 CA 93329, U01CA093326, U01 CA93326, U01 CA93348, U01-CA093344, U01 CA93344, U01CA093348, U01 CA93339, U01CA093329, U01 CA93324, U01CA093332, U01CA093324, U01 CA93324, U01 CA93326, U01 CA93329, U01 CA93332, U01 CA93339, U01 CA93344, and U01 CA93348)
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
Keywords
informal caregivers, cancer caregiving, home-based cancer care, caregiver burden, caregiver resources, caregiver education, quality of care, colorectal cancer, lung cancer, metastatic cancer, caregiver health, caregiver workload
MeSH terms
Activities of Daily Living, Adult, Aged, Cross-Sectional Studies, Family, Female, Home Nursing, Humans, Male, Middle Aged, Neoplasms, Surveys and Questionnaires, Social Support, Stress, Psychological, Cohort Studies, Caregivers, Cost of Illness, Young Adult

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