Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers
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.
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.
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.
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.
KeywordsCancer Caregivers Family End-user engagement Research priorities Delphi
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.
- 5.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, LondonGoogle Scholar
- 6.Garrett M, Fitzmaurice NML, Ware JH (2011) Applied longitudinal analysis, 2nd edn. Wiley,Hoboken, p 740Google Scholar
- 7.Girgis A, Lambert SD (2017) Cost of informal caregiving in cancer care. Cancer Forum 41:16–22Google Scholar
- 12.Hosmer D, Lemeshow S, Sturdivant RX (2013) Applied logistic regression, 3rd edn. Wiley,Hoboken, p 528Google Scholar
- 13.Hsu C-C, Sandford BA (2007) The Delphi technique: making sense of consensus. Pract Assess Res Eval 12:1–8Google Scholar
- 17.Lambert SD, Girgis A, Levesque J (2016) The impact of cancer and chronic conditions on caregivers and family members. In: Koczwara B (ed) Cancer and chronic conditions: addressing the problem of multimorbidity in Cancer patients and survivors. Springer Science+Business Media, BerlinGoogle Scholar
- 20.National Institute for Health and Clinical Excellence (2004) Improving supportive and palliative care for adults with cancer. https://www.nice.org.uk/guidance/CSG4. Accessed 17 July 2018
- 22.Okoli C, Pawlowski SD (2004) The Delphi method as a research tool: an example, design considerations and applications. Inf Resour Manag J 42:15–29Google Scholar
- 25.Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin PJ, Montori VM, Murad MH (2015) Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect 18:1151–1166CrossRefGoogle Scholar
- 26.Sinha M (2013) Spotlight on Canadians: results from the General Social Survey. Portrait of caregivers, 2012. In: Editor (ed)^(eds) Book Spotlight on Canadians: results from the General Social Survey. Portrait of caregivers, 2012., CityGoogle Scholar