Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 Mar;27(3):805-817.
doi: 10.1007/s00520-018-4314-y. Epub 2018 Jul 31.

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

Sylvie D Lambert  1   2 , Lydia Ould Brahim  3 , Marjorie Morrison  4 , Afaf Girgis  5 , Mark Yaffe  6   7 , Eric Belzile  6 , Karissa Clayberg  6 , John Robinson  8 , Sally Thorne  9 , Joan L Bottorff  10 , Wendy Duggleby  11 , Heather Campbell-Enns  12 , Youngmee Kim  13 , Carmen G Loiselle  3   14
Affiliations

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

Sylvie D Lambert et al. Support Care Cancer. 2019 Mar.

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; Delphi; End-user engagement; Family; Research priorities.

PubMed Disclaimer

Conflict of interest statement

Conflict of interest The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Overview of Delphi procedure and data collection
See this image and copyright information in PMC

References

    1. Alake-Tuenter E, Biemans HJA, Tobi H, Mulder M (2013) Inquiry-based science teaching competence of primary school teachers: a Delphi study. Teach Teach Educ 35:13–24
    1. Beatty L, Lambert S (2013) A systematic review of internet-based self-help therapeutic interventions to improve distress and disease-control among adults with chronic health conditions. Clin Psychol Rev 33:609–622 - PubMed
    1. Browne N, Robinson L, Richardson A (2002) A Delphi study on the research priorities of European oncology nurses. Eur J Oncol Nurs 6:133–144 - PubMed
    1. Chang L (1994) A psychometric evaluation of 4-point and 6-point Likert-type scales in relation to reliability and validity. Appl Psychol Meas 18:205–215
    1. Donetto S, Tsianakas V, Robert G (2014) Using Experience-based Co-design to improve the quality of healthcare: mapping where we are now and establishing future directions. In: Editor (ed)^(eds) Book Using Experience-based Co-design to improve the quality of healthcare: mapping where we are now and establishing future directions. King’s College London, City, London

LinkOut - more resources