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Cited by 564Nursing care and researchCancer survivorship and careIntergenerational Family Dynamics and Caregiving

Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving

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Kent, Erin E., Rowland, Julia H., Northouse, Laurel, Litzelman, Kristin, Chou, Wen‐Ying Sylvia, Shelburne, Nonniekaye, Timura, Catherine, O'Mara, Ann +1 more·2016·Cancer
DOI 10.1002/cncr.29939PMC PMC5597246
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Abstract

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2‐day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient‐caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987–95 . © 2016 American Cancer Society .

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  • Advances in cancer diagnosis, treatment, and palliative care have improved patient survival and shifted care from highly complex institutions to outpatient centers or patients' homes.

    “Advances in cancer diagnosis, treatment, and palliative care have improved patient survival and shifted care from highly complex institutions to outpatient centers or patients’ homes.”

    From Anxiety, depression, and quality of life of caregivers of palliative care patients with cancer (2025) · cites this paper as [5]

    The Introduction’s “Distinguishing Features of Informal Caregiving in the Cancer Context” section says cancer care is moving from tertiary or inpatient centers toward outpatient and community-based centers or home care. It also notes a growing number of people living long-term after cancer diagnosis, but does not attribute improved survival or the shift in care setting to advances in diagnosis, treatment, and palliative care. Page numbers are unavailable in our copy. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • African American and rural-dwelling family caregivers of patients with newly diagnosed advanced cancer face circumstances that can exacerbate challenges of the role.

    “African American and rural-dwelling family caregivers of patients with newly diagnosed advanced cancer not only shoulder a demanding set of caregiving responsibilities but also face circumstances that can exacerbate challenges of the role.1,2”

    From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [1]

    The Introduction describes demanding cancer-caregiving responsibilities, and Session 1, “Burden of Informal Cancer Caregiving” (page not provided), reports greater emotional distress among caregivers of people with advanced-stage disease. The paper does not establish that African American or rural-dwelling caregivers of newly diagnosed patients face additional circumstances that exacerbate those challenges. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • The priority areas coincide with the priorities raised by Kent et al. for integrating the caregiver into oncology care.

    “En cuanto a la prevención, estas áreas prioritarias coinciden con las prioridades planteadas por Kent et al. para integrar al cuidador en la atención oncológica (2).”

    From Síndrome de burnout en cuidadores familiares de pacientes oncológicos: revisión sistemática (2026) · cites this paper as [2]

  • Family caregivers assume caregiving activities for the person with cancer as a result of shifts in care settings.

    “These changes have resulted in family caregivers assuming caregiving activities for the person with cancer5”

    From Anxiety, depression, and quality of life of caregivers of palliative care patients with cancer (2025) · cites this paper as [5]

  • Informal caregivers may require coaching and emotional support as a result of their own emotional reactions to the patients' diagnosis and prognosis.

    “Furthermore, informal caregivers may require coaching and emotional support as a result of their own emotional reactions to the patients' diagnosis and prognosis [4].”

    From Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study (2023) · cites this paper as [4]

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Cited by

Sorted by citations

Authors
Kent, E. E., Rowland, J. H., Northouse, L., Litzelman, K., Chou, W. S., Shelburne, N., Timura, C., O'Mara, A., & Huss, K.
Affiliations
  • National Cancer Institute (US)
  • University of Michigan (US)
  • National Institute of Nursing Research (US)
  • Division of Cancer Prevention National Cancer Institute Bethesda Maryland
Corresponding author
Kent, Erin E.
ORCID
Venue
Cancer
Publisher
Wiley
Published
2016-03-17
Volume
122
Issue
13
Pages
1987-1995
ISSN
  • 0008-543X (ISSN-L)
  • 1097-0142
DOI
10.1002/cncr.29939
PMC
PMC5597246
OpenAlex
W2299306621
Cited by
564
References
9
Citations by year
2026: 49 · 2025: 54 · 2024: 60 · 2023: 63 · 2022: 81 · 2021: 74 · 2020: 60 · 2019: 60 · 2018: 33 · 2017: 23 · 2016: 6
FWCI
11.10
Type
journal article
Language
en
Open access
Licence
Locations
  • Cancer (publishedVersion, public-domain)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institutes of Health (Z99 CA999999)
  • National Cancer Institute
  • National Institute of Nursing Research
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
family caregivers, caregiver burden, caregiver prevalence, cancer survivorship, patient-caregiver dyads, caregiver interventions, research priorities
MeSH terms
Psychosocial Support Systems, Humans, Neoplasms, Social Support, United States, Caregivers, Survivors, Evidence-Based Medicine

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