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Canadian Journal of Anesthesia/Journal canadien d'anesthésie

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Open Access 01-04-2019 | Case Reports / Case Series

Engaging family partners in deceased organ donation research—a reflection on one team’s experience

Authors: Amanda van Beinum, MSc, Heather Talbot, BA, BEd, Laura Hornby, MSc, Marie-Chantal Fortin, MD, PhD, Sonny Dhanani, MD

Published in: Canadian Journal of Anesthesia/Journal canadien d'anesthésie | Issue 4/2019

Abstract

Purpose

Clinical researchers are now encouraged to include patient partners in all research projects. Nevertheless, published accounts of patient engagement in complex research projects, such as those involving critically ill and dying patients, are lacking. Whether this absence is due to the relatively new emergence of patient engagement research methods or fundamental challenges regarding family engagement in challenging research contexts is unclear. We describe our experiences with forming a researcher-family partnership in a deceased organ donation research project involving the prospective observation of potential and actual deceased organ donors dying in the intensive care unit.

Methods

We used the Guidance for Reporting Involvement of Patients and the Public evidence-based, consensus-informed reporting guidelines to organize our narrative.

Results

We were able to initiate and sustain a research consultant relationship with the mother of a deceased organ donor for over two years. Challenges faced included: constraints on money and time, communication preferences, and the emotional stress of participating in difficult conversations. Positive outcomes included: improvement of data collection tools, new opportunities for access to research populations, and motivation to include family partnership in future grant proposals.

Conclusions

Family engagement in deceased organ donation research is feasible and contributes positively to study progress and outcomes. Patient and family engagement in challenging research contexts may require special attention to the emotional challenges of participation. We hope that our experience will encourage clinical researchers working in deceased organ donation and similarly complex domains to consider including patient partners in their projects.

Canadian Institutes of Health Research. Canada’s Strategy for Patient-Oriented Research Improving health outcomes through evidence-informed care - 2011. Available from URL: http://www.cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf (accessed October 2018).

Lough S. Need to define patient engagement in research. CMAJ 2015; 187: E385-6.CrossRefPubMedPubMedCentral

Abelson J. Patient Engagement and Canada’s SPOR Initiative: A Resource Guide for Research Teams and Networks. Ontario SPOR Support Unit; 2015. Available from URL: http://ossu.ca/wp-content/uploads/OSSU-Patient-Engagement-Resource-Document-May2015.pdf (accessed October 2018).

Evans D, Coad J, Cottrell K, et al. Public involvement in research: assessing impact through a realist evaluation. Health Services and Delivery Research 2014; 2: 1-128.CrossRef

Forsythe LP, Ellis LE, Edmundson L, et al. Patient and stakeholder engagement in the pcori pilot projects: description and lessons learned. J Gen Intern Med 2016; 31: 13-21.CrossRefPubMed

Williamson GR, Prosser S. Action research: politics, ethics and participation. J Adv Nurs 2002; 40: 587-93.CrossRefPubMed

Carroll S, Embuldeniya G, Abelson J, et al. Questioning patient engagement: research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network. Patient Prefer Adherence 2017; 11: 1573-83.CrossRefPubMedPubMedCentral

Cheung PP, de Wit M, Bingham CO 3^rd, et al. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. J Rheumatol 2016; 43: 187-93.

Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem 2017; https://doi.org/10.1186/s40900-017-0062-2.

10.

DDePICt Research Group. Death Prediction and Physiology after Removal of Therapy (DePPaRT) Study. The DePPaRT Study -2015; Available from URL: http://www.ddepict.com/deppart-study.html (accessed October 2018).

11.

Ballesteros Gallego F, Martin C, Allard J, et al. Defining future research priorities in donation and organ and stem cell transplantation with patients, families, caregivers, healthcare providers and researchers within the Canadian National Transplant Research Program. Transplant Direct 2018; https://doi.org/10.1097/txd.0000000000000791.

12.

Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res 2014; 14: 89.CrossRefPubMedPubMedCentral

13.

Bédard S, Allard J, Ballesteros F, et al. Patient-Researcher Partnership Platform within the CNTRP: Ethical issues, challenges, and successes after one year of experience. CST-CTRMS Joint Scientific Meeting, Halifax, NS, September 2017.

14.

Canadian National Transplant Research Program. CNTRP Patient Researcher Partnership Platform - 2014. Available from URL: https://www.cntrp.ca/patient-partnership-strategy (accessed October 2018).

15.

Hébert MJ, Hartell D, West L. Transdisciplinary tour-de-force: The Canadian National Transplant Research Program. Transplantation 2016; 100: 466-70.CrossRefPubMed

16.

Allard J, Durand C, Anthony SJ, et al. Perspectives of patients, caregivers and researchers on research priorities in donation and transplantation in Canada: a pilot workshop. Transplant Direct 2017; 3: e127.CrossRefPubMedPubMedCentral

17.

Sofolahan-Oladeinde Y, Newhouse RP, Lavallee DC, Huang JC, Mullins CD. Early assessment of the 10-step patient engagement framework for patient-centred outcomes research studies: the first three steps. Fam Pract 2017; 34: 272-7.CrossRefPubMed

18.

Azoulay É, Timsit JF, Sprung CL, et al. Prevalence and Factors of intensive care unit conflicts: the conflicus study. Am J Respir Crit Care Med 2009; 180: 853-60.CrossRefPubMed

19.

McAdam JL, Dracup KA, White DB, Fontaine DK, Puntillo KA. Symptom experiences of family members of intensive care unit patients at high risk for dying. Crit Care Med 2010; 38: 1078-85.CrossRefPubMed

20.

National Institute for Health Research; Hayes H, Buckland S, Tarpey M; INVOLVE Coordinating Centre. Briefing notes for researchers: public Involvement in NHS, public health and social care research. Eastleigh - 2012. Available from URL: http://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf (accessed October 2018).

21.

Canadian Foundation for Healthcare Improvement, British Columbia Centre of Excellence for Women’s Health, Fraser Health. Patient Engagement: Heard and Valued. A workbook for meaningful engagement of patients that have not traditionally been heard in healthcare planning. Surrey: Fraser Health; 2013; Available from URL: http://www.cfhi-fcass.ca/sf-docs/default-source/patient-engagement/awesome_workbook-fraserhealth.pdf (accessed October 2018).

22.

Alberta Health Services. A Guidebook for Engaging Patient and Family Advisors. The Engagement & Patient Experience Team - January 2016; Available from URL: https://www.albertahealthservices.ca/assets/info/pf/pe/if-pf-pe-guidebook-for-engaging-patient-family-advisors.pdf (accessed October 2018).

23.

Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract 2017; 34: 290-5.PubMed

24.

Ives J, Damery S, Redwod S. PPI, paradoxes and Plato: who’s sailing the ship? J Med Ethics 2013; 39: 181-5.CrossRefPubMed

25.

Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy 2006; 76: 156-68.CrossRefPubMed

26.

Black A, Strain K, Wallsworth C, et al. What constitutes meaningful engagement for patients and families as partners on research teams? J Health Serv Res Policy 2018; 23: 158-67.CrossRefPubMedPubMedCentral

27.

Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf 2016; 25: 626-32.CrossRefPubMedPubMedCentral

Title: Engaging family partners in deceased organ donation research—a reflection on one team’s experience
Authors: Amanda van Beinum, MSc
Heather Talbot, BA, BEd
Laura Hornby, MSc
Marie-Chantal Fortin, MD, PhD
Sonny Dhanani, MD
Publication date: 01-04-2019
Publisher: Springer International Publishing
Published in: Canadian Journal of Anesthesia/Journal canadien d'anesthésie / Issue 4/2019
Print ISSN: 0832-610X
Electronic ISSN: 1496-8975
DOI: https://doi.org/10.1007/s12630-018-01287-3

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Engaging family partners in deceased organ donation research—a reflection on one team’s experience

Abstract

Purpose

Methods

Results

Conclusions

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

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