Introduction

Organ donation processes involve multiple steps: donor identification; assessment and screening of suitability of organ donors; medical management of organ donors; family support; consent and authorization; and organ retrieval. 1 Success of these steps requires involvement of a multi-professional team, with the organ and tissue donation coordinator (OTDC) the essential participant in all cases. Organ and tissue donation coordinators are knowledgeable of the operationalization and psychosocial aspects of donation and transplantation processes, and are present throughout the donation process to support families and health care teams, communicate with organ donation organizations, and support accountability throughout the process.

Multiple studies have highlighted the benefits of having an OTDC managing the organ donation processes. 2-8 These benefits include increased organ donation numbers, successful organ retrievals, and richer support to organ donor families. The value of OTDCs is exceedingly recognized by organ donor family members. 7-11 Canadian OTDCs are usually registered nurses with specific training in organ donation and transplantation, or experience in critical or acute care. Organ and tissue donation coordinators might have multiple roles, including coordinating tissue donation, educating health care staff about organ donation, leading bereavement discussions, counseling staff, and undertaking primary research studies involving organ donors and/or their families. This work is labor intensive, and OTDCs encounter strong emotions such as anxiety, worry, hope, sadness, loss, grief, anger, and happiness. Dealing with all these emotions while providing quality services is a challenge faced daily by OTDCs. Coping with emotions and quality expectations can be overwhelming and many OTDCs resign. 12

Organ and tissue donation coordinators' turnover rates may be a result of increased burnout levels and/or compassion fatigue (CF), due to the intense emotional exposure they experience. Burnout is a psychological state in response to prolonged and chronic exposure to job stressors. It is described as a multi-dimensional syndrome with three core dimensions: exhaustion, depersonalization (cynicism), and inefficacy (reduced personal accomplishment). 13 A sequential link has been established from exhaustion to cynicism, but the link to inefficacy is less clear, and believed to be a concurrent process rather than sequential. Burnout is specific to the work context, and it is situation-specific, in contrast to depression, which tends to extend to one's professional and private life. Consequences of burnout can be seen in one's job performance (absenteeism, intention to leave the job, actual turnover, negative impact on colleagues), and health (precipitation of anxiety, depression, drops in self-esteem). 13 Health care professionals with burnout are more susceptible to errors, and their clients are usually less satisfied with the quality of care. 14 Burnout in OTDCs may even impact organ donation rates as studies suggest that family satisfaction is associated with increased consent to donate organs, 14,15 and consent rates are higher when OTDCs are involved in the approach to organ donation. 16

While burnout results from the stresses of interactions within the work environment, CF results from the exposure to human suffering. Compassion fatigue is a term first coined by Joison in 1992 to describe unique emotional stressors that affect people in caregiving professions. 17 Health care professionals usually maintain a balanced empathic engagement with appropriate emotional boundaries while caring for patients. However, in some areas of care, such as intensive care units, cancer centers, and trauma centers, caregivers experience prolonged exposure to trauma and loss. This exposure may affect caregivers as they begin to integrate emotions and grieve with patients, leading to increased stress and emotional pain. Health professionals experiencing CF begin to question the meaning of life, risk losing a sense of purpose, and may develop a pervasive hopelessness. 18 People with CF present psychological and physical symptoms similar to post-traumatic stress disorder: nightmares, anxiety or other psychological distress, recurrent remembrance, irritability, low concentration levels, and difficulty sleeping. 18

Burnout and CF were investigated among nurses in general. A systematic review summarized the available literature on the prevalence of CF and burnout among health care professionals in intensive care units, and nurses working in this environment are exposed to high levels of work-related stressors that might lead to CF and burnout, increasing their intention to leave the job. 19 An integrative review also investigated intentions to leave the job among nurses, and showed that moral distress was positively correlated to burnout. 20 In addition, health care providers experiencing high levels of moral distress had high intentions to leave their jobs. 20 A qualitative systematic review summarized the antecedents, responses to stress, symptoms of compassion stress (precursor of CF) and CF, and personal/organizational coping measures to nurses to prevent or manage compassion distress and CF. 21 High variability regarding the definition CF was found in the literature, and we will consider the following as synonymous for this study: compassion stress, 22 compassion distress, vicarious trauma or secondary traumatic stress, a result of post-traumatic stress or from a combination of post-traumatic stress and burnout, and sometimes CF was equated with burnout. 21

Specific key characteristics or factors related to the development of burnout and CF in nurses and the strategies adopted to reverse it have been reported in general. However, there is a lack of a comprehensive description of burnout and CF specific to OTDCs. Since the role of an OTDC exists worldwide with similar responsibilities and workload, this may be an international phenomenon. A search of PubMed, Cochrane Library, and the JBI Database of Systematic Reviews and Implementation Reports using the search terms "burnout" and "compassion fatigue" revealed no current scoping reviews examining burnout, CF, or the consequences of burnout and CF specifically with OTDCs. The authors believe that there is a body of unpublished material available worldwide in organ donation organizations, government-related documents, doctoral theses and so on, that will help identify those key components for this specific population, and support the development of interventions and research to test those interventions in this context. A scoping review will facilitate an examination of the range of evidence and current knowledge on this topic.

The World Health Organization (WHO) has recognized burnout as a legitimate syndrome in its international disease classification. 23 Organ and tissue donation coordinators may be susceptible to burnout and CF due to the nature and dynamic of their work. Research on turnover rates among OTDCs has shown that job tenure was less than three years, 24 which is one of the possible consequences of burnout and CF. Increased turnover rates of OTDCs have a significant impact on the ability of organ donation organizations to optimize organ donation. Therefore, this current scoping review will help inform understanding of the nature of burnout and CF in this population as well as available strategies used to handle it. The objective of this review is to develop a comprehensive description of burnout and CF as well as to map the risk and protective factors, consequences, and strategies to manage burnout and/or CF among OTDCs worldwide.

Review questions

The primary review question is as follows: What is known about burnout and CF among OTDCs worldwide?

This review will seek to answer the following subquestions:

i. What are the risk factors related to the development of burnout and/or CF among OTDCs that are measured or described in the literature?

ii. What are the protective factors to the development of burnout and/or CF among OTDCs?

iii. What are the strategies adopted to manage burnout and/or CF among OTDCs?

iv. What are the consequences of burnout and/or CF to the practice and mental health of OTDCs?

Inclusion criteria

Participants

This scoping review will consider healthcare professionals in the role of OTDCs in any country. Terms to describe OTDCs vary worldwide, so the following terms will be considered: transplant coordinators, tissue and organ procurement, organ and tissue donation coordinators, recovery coordinators, tissue and organ harvesting, hospital development coordinators, and clinical services coordinators.

Concept

The main concepts of interest are burnout and/or CF. More specifically, the authors are interested in identifying defining characteristics (ie, exhaustion, depersonalization [cynicism], and inefficacy); underlying factors and/or triggers of burnout and/or CF (ie, lack of control, unclear job expectations, dysfunctional workplace dynamics, and extremes of activity) in OTDCs; as well as the consequences to their practice or mental health, and the protective factors and strategies used to manage burnout and CF. Therefore, studies, reports, or documents that investigate not only the terms "burnout syndrome" and/or "CF," but also "moral distress," "attrition," "grief," "trauma," "vicarious trauma," "secondary trauma," "conflict," "anxiety," "psychological distress," "post-traumatic stress disorder" (PTSD), "depression," and "resilience" among OTDCs worldwide will be considered. Some of the terms were added after consulting researchers who had previously conducted studies in burnout and CF with health care professionals in intensive care units.

Context

Articles will be considered for inclusion in this review within the context of the role of OTDCs in acute care settings at any part of, or the entirety of, the deceased organ donation process. For example, identification of a potential organ donor, referral of potential organ donors from the hospital to the organ donation organizations, organ donor maintenance, brain death diagnostics, family interview for organ donation, organ allocation, and/or surgery for organ retrieval.

Types of sources

This scoping review will consider both experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies, and interrupted time-series studies. Also, analytical observational studies, including prospective and retrospective cohort studies, case-control studies, and analytical cross-sectional studies will be considered for inclusion. This review will also consider descriptive observational study designs including case series, individual case reports, and descriptive cross-sectional studies for inclusion.

Qualitative studies will also be considered if they focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, and action research. Systematic reviews that meet the inclusion criteria will also be considered.

Text and opinion papers will be considered for inclusion, as well as unpublished material (unpublished research data, reports, institutional protocols, government documents) provided by researchers in the organ donation field worldwide.

Studies published in Portuguese, Spanish, French, and English will be included. Only studies published after 1980 will be examined as organ transplantation started to become a more common, successful treatment for end-stage organ failure around this time; policies and practices began to be developed; and the need for organ donation/transplantation coordination was identified. 25

Methods

The proposed scoping review will be conducted in accordance with JBI methodology. 26,27

Search strategy

The search strategy aims to find both published and unpublished papers. A three-step search strategy will be used in this review. A health sciences librarian, experienced in systematic reviews and search sensitivity analysis, created the search strategies. An initial limited search of MEDLINE (Ovid) was undertaken with an analysis of the text words contained in the titles, abstracts, and index terms used to describe the articles. MEDLINE was chosen for the initial search, because it allows for adjacency searching, which will likely maximize chances of finding related articles. A second search was developed based on these results, peer reviewed using PRESS, 28 and adapted for the syntax and subject heading of each database (initial search strategy for MEDLINE is presented in Appendix I). Thirdly, the reference lists of all included documents will be searched for additional papers. Additionally, gray literature will be requested from organ donation organizations worldwide, via a request posted on a listserv for organ donation professionals in North America. Organ donation researchers will also be contacted through professional organizations.

The databases to be searched include MEDLINE, Embase, and PsycINFO using the Ovid interface; CINAHL using the EBSCOhost interface; and LILACS and PTSDpubs, through their native interfaces. Sources of unpublished studies and gray literature include organ donation organizations' websites, Google Scholar, 29,30 as well as Research Gate, OpenGrey, Open Access Theses and Dissertations, contact with organ donation organizations, and other researchers.

Study selection

Following the search, all identified citations will be collated and uploaded into Covidence (Veritas Health Information, Melbourne, Australia) and duplicates removed. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant studies will be retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). The full text of selected citations will be assessed in detail against the inclusion criteria by two independent reviewers. Studies that do not meet the inclusion criteria will be excluded, and reasons for exclusion will be provided in an appendix in the final review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion or with a third reviewer. The results of the search will be reported in full in the final scoping review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) flow diagram. 31

Data extraction

Data will be extracted from papers included in the scoping review by two independent reviewers using a data extraction tool developed and tested by the reviewers. The data extracted will include specific details about the population, concept, context, study methods, and key findings relevant to the review objective. A draft extraction tool is provided (Appendix II). The draft data extraction tool will be modified and revised as necessary during the process of extracting data from each included paper. Modifications will be detailed in the full scoping review report. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Authors of papers will be contacted to request missing or additional data, where required.

Data analysis and presentation

Scoping reviews collate the evidence using a descriptive numerical summary and a thematic analysis. The descriptive numerical summary will describe the characteristics of included studies (number of studies, study design, publication year, study population characteristics, and countries where studies were conducted). The thematic analysis will provide an overview of the breadth of the literature by using a qualitative content analytical technique to identify themes. 32 Themes will be compiled into a topic matrix for comparison by topic. For each of the subquestions, tables and charts will be produced mapping: i) risk factors related to the development of burnout and/or CF; ii) protective factors to the development of burnout and/or CF; iii) strategies adopted to manage burnout and/or CF; and iv) consequences of burnout and/or CF to the practice and mental health of OTDCs. The key concepts of burnout and CF will be the primary unit of analysis unless it is determined that the two concepts can be combined. By applying a consistent approach to reporting the findings, the authors will be able to make comparisons across the two concepts, identify similarities and differences, develop a conceptual framework, and identify gaps.

Acknowledgments

Queen's Collaboration for Healthcare Quality: A JBI Centre of Excellence for guidance in the development of this protocol. Peter Wright and Diana Brodrecht for reviewing the protocol; Katie O'Hearn (Children's Hospital of Eastern Ontario Research Institute), for methodological assistance; Amanda Ross-White (Bracken Health Sciences Library, Queen's University), for developing the phase one search and peer review of the main MEDLINE search strategy; and Margaret Sampson (Children's Hospital of Eastern Ontario), for developing the main electronic search strategies. David Kuhl for reviewing the search terms list and suggesting additional key terms for the search strategy building.

Funding

This study is part of a three-phase study funded by Canadian Blood Services. Canadian Blood Services has no role in content development of this study.

Appendix I: Search strategy

Date: June 21, 2019

Lower date limit: 1946

Database: Ovid MEDLINE(R), Ovid MEDLINE(R) Daily and epub ahead of print, in-process and other non-indexed citations <1946 to Present>

1. exp "Tissue and Organ Procurement"/ (19,490)

2. (transplant^* adj3 coordinator^*).mp. (378)

3. ("organ donation^*" adj3 coordinator^*).mp. (19)

4. ("tissue^* donation" adj3 coordinator^*).mp. (2)

5. (transplant^* adj3 co-ordinator^*).mp. (29)

6. ("organ donation^*" adj3 co-ordinator^*).mp. (1)

7. ("tissue^* donation" adj3 co-ordinator^*).mp. (1)

8. 1 or 2 or 3 or 4 or 5 or 6 or 7 (19,687)

9. Burnout, Professional/ (10,588)

10. Compassion Fatigue/ (262)

11. burnout^*.mp. (14,650)

12. Occupational Stress/ (859)

13. 9 or 10 or 11 or 12 (15,461)

14. 8 and 13 (15)

Appendix II: Data extraction instrument

References