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

Erin E. Kent, Julia H. Rowland, Laurel Northouse, Kristin Litzelman, Wen Ying Sylvia Chou, Nonniekaye Shelburne, Catherine Timura, Ann O'Mara, Karen Huss

Research output: Contribution to journalReview articlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)1987-1995
Number of pages9
JournalCancer
Volume122
Issue number13
DOIs
StatePublished - Jul 1 2016
Externally publishedYes

Keywords

  • behavioral science
  • cancer
  • family caregivers
  • neoplasms
  • supportive care
  • technology

ASJC Scopus subject areas

  • Cancer Research
  • Oncology

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