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Supportive Care in Cancer

, Volume 27, Issue 3, pp 805–817 | Cite as

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

  • Sylvie D. LambertEmail author
  • 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
Original Article

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.

Keywords

Cancer Caregivers Family End-user engagement Research priorities Delphi 

Notes

Funding information

This study was funded by a Canadian Institutes of Health Research (CIHR) planning and dissemination grant. S. Lambert is the holder of a Canada Research Chair Tier 2 in self-management. A. Girgis is supported by a Cancer Institute New South Wales Grant. Y. Kim is supported by an American Cancer Society Research Scholar Grant and a National Institute of Health Grant. C. G. Loiselle is supported, in part, by the McGill University Christine and Herschel Victor/Hope & Cope Chair in Psychosocial Oncology.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Sylvie D. Lambert
    • 1
    • 2
    Email author
  • Lydia Ould Brahim
    • 1
  • Marjorie Morrison
    • 3
  • Afaf Girgis
    • 4
  • Mark Yaffe
    • 2
    • 5
  • Eric Belzile
    • 2
  • Karissa Clayberg
    • 2
  • John Robinson
    • 6
  • Sally Thorne
    • 7
  • Joan L. Bottorff
    • 8
  • Wendy Duggleby
    • 9
  • Heather Campbell-Enns
    • 10
  • Youngmee Kim
    • 11
  • Carmen G. Loiselle
    • 1
    • 12
  1. 1.Ingram School of NursingMcGill UniversityMontrealCanada
  2. 2.St. Mary’s Research CentreMontrealCanada
  3. 3.CanceractionTorontoCanada
  4. 4.Ingham Institute for Applied Medical Research, South Western Sydney Clinical SchoolUniversity of NSWLiverpoolAustralia
  5. 5.Department of Family MedicineMcGill University and St. Mary’s Hospital CenterMontrealCanada
  6. 6.Tom Baker Cancer Center and Cumming School of Medicine, Division of Psychosocial OncologyCalgaryCanada
  7. 7.School of NursingUniversity of British ColumbiaVancouverCanada
  8. 8.School of NursingUniversity of British Columbia - OkanaganKelownaCanada
  9. 9.Faculty of NursingUniversity of AlbertaEdmontonCanada
  10. 10.Cancercare ManitobaWinnipegCanada
  11. 11.Department of PsychologyUniversity of MiamiCoral GablesUSA
  12. 12.Gerald Bronfman Department of OncologyMcGill UniversityMontrealCanada

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