Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers

Sylvie D. Lambert, Lydia Ould Brahim, Marjorie Morrison, Afaf Girgis, Mark Yaffe, Eric Belzile, Karissa Clayberg, John Robinson, Sally Thorne, Joan L. Bottorff, Wendy Duggleby, Heather Campbell-Enns, Youngmee Kim, Carmen G. Loiselle

Research output: Contribution to journalArticle

3 Scopus citations

Abstract

Purpose: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. Methods: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders’ answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants’ responses. Results: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of “burnout” for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. Conclusion: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

Original languageEnglish (US)
Pages (from-to)805-817
Number of pages13
JournalSupportive Care in Cancer
Volume27
Issue number3
DOIs
StatePublished - Mar 1 2019

Keywords

  • Cancer
  • Caregivers
  • Delphi
  • End-user engagement
  • Family
  • Research priorities

ASJC Scopus subject areas

  • Oncology

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    Lambert, S. D., Ould Brahim, L., Morrison, M., Girgis, A., Yaffe, M., Belzile, E., Clayberg, K., Robinson, J., Thorne, S., Bottorff, J. L., Duggleby, W., Campbell-Enns, H., Kim, Y., & Loiselle, C. G. (2019). Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers. Supportive Care in Cancer, 27(3), 805-817. https://doi.org/10.1007/s00520-018-4314-y