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Nurses' intentions and behaviors regarding organ donation : a scoping review Butler, Heidi Elizabeth Sep 30, 2017

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1  NURSES’ INTENTIONS AND BEHAVIORS REGARDING ORGAN DONATION: A SCOPING REVIEW  by   HEIDI ELIZABETH BUTLER BScN, UBC, 2012 BAH, Queen’s University, 2008  A SPAR PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  MASTER OF SCIENCE IN NURSING  in  THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (School of Nursing) THE UNIVERSITY OF BRITISH COLUMBIA   Vancouver Sept. 2017   © Heidi Elizabeth Butler, 2017    2 TABLE OF CONTENTS  ABSTRACT………………………………………………………………………3 TRANSPLANT IN CANADA…………………………………………………...5  Living Donors……………………………………………………………..8  Deceased Donors…………………………………………………………. 8  Consent for Donation in Canada………………………………………….10 CLOSING THE GAP……………………………………………………………11 NURSES’ ROLE IN DONATION………………………………………………13 THEORETICAL PERSPECTIVE……………………………………………..14 LITERATURE SEARCH STRATEGY………………………………………..16 FINDINGS………………………………………………………………………..16  Attitudes/Perceptions………………………………………………………20  Perceived Behavioural Control……………………………………………24  Social Norms………………………………………………………………27 DISCUSSION…………………………………………………………………….28 IMPLICATIONS FOR NURSING PRACTICE……………………………….31 KNOWLEDGE TRANSPLATION STRATEGIES…………………………...34 REFERENCES…………………………………………………………………...36     3 ABSTRACT BACKGROUND:  Solid organ transplant can drastically improve quality of life and extend life expectancy. In Canada and around the world, the demand for organs well exceeds the available supply. Nurses in critical care areas play an important role in identifying and managing donors.  Efforts have been made to improve donation rates in Canada, however, recent reviews of donor potential have revealed many missed opportunities linked to healthcare provider behaviours.  AIMS: The Theory of Planned Behaviour (TPB) has been utilized to help explain and improve various health behaviours. A scoping review of the literature guided by the TPB was conducted exploring nurses’ attitudes, perceived behavioural control and social norms around donation.  Applying the TPB model, I considered how these factors may influence nurses’ willingness to identify potential donors, speak with families and participate in donor management.   SEARCH STRATEGY: Two databases CINAHL and PubMed were searched to identify 17 relevant articles included in the scoping review. Studies included were focused on nurses and organ donation, and at least one element of the TPB: attitudes, knowledge/perceived behavioural control and/or social norms in relation to organ donation.  FINDINGS:  The scoping review revealed nurses had mostly positive attitudes towards organ donation. However, the nurses in the studies reviewed felt they lacked knowledge around the concept of brain death, donor legality and the donor process.  Nurses also lacked confidence and skills in initiating conversations regarding donation with families.  They also recognized a need for more and continued education regarding organ donation.  4 Nurses in one of the studies perceived there to be a lack of organizational structures and guidelines in place to help support donation.   CONCLUSION:  Applying the TPB  model to the findings, one can infer that nurses’ attitudes, perceived behavioural control and social norms related to organ donation affect their intentions and behaviours of referring potential donors and approaching families. Addressing the barriers that exist for nurses participating in the donation process should be examined in order to maximize the capacity of nurses working in critical care areas. RELEVANCE TO NURSING PRACTICE: Nurses are seen as an essential link in organ procurement and play an important role in addressing the organ shortage in Canada by simply identifying potential donors and supporting families through the process.  Incorporating more and frequent education and training in hospital and in classroom could help to improve nurses’ capacity to participate in the organ donor process, address negative attitudes and unpack ethically challenging or morally distressing cases.           5 Transplant in Canada  A single deceased organ donor in Canada can save the lives of eight people and improve many more lives (Government of Canada, 2017).  Currently, there is a global shortage of organs for transplantation even for the most progressive countries as they relate to donation and transplantation (Halldorson & Roberts, 2013). Donation rates are generally reported as deceased donors per million population (Canadian Institutes for Health Information, 2014). In Canada, deceased donors per million population as of 2016 was 18.2 (Canadian Blood Services, 2016).  Canada’s donor rate has improved since 2006 where the rate was 14.1, however, as a nation we are not nearly as effective as our neighbours in the United States of America, which boasts 26 donors per million population (Halldorson & Roberts, 2013). Spain is the leading nation in organ donation, with the highest rate of donation at 34 donors per million population (Halldorson & Roberts, 2013).   Unfortunately, the demand for solid organs is overtaking the supply in Canada and around the world (Canadian Institute for Health Information, 2014).  The Canadian Institutes for Health Information (2015) reported that Canada in 2013 had 1,141 organ donors that resulted in 2,367 solid organ life saving transplants.  Impressive numbers, however, 4,433 patients would still remain on the waitlist (Canadian Institute for Health Information, 2015). Despite efforts to improve donation rates, many Canadians die waiting to receive a life saving transplant. In 2013, 246 Canadians died waiting for an organ transplant and in 2014, 278 people died on the waitlist (Canadian Institute for Health Information, 2015; Government of Canada, 2017). The most common organ needed for transplant is the kidney, which can be transplanted from both deceased and 6 living donors (Canadian Blood Services, 2016). Just over 5000 patients are placed on dialysis every year and many will need a kidney transplant to survive (Canadian Institute for Health Information, 2015). While the number of donors has increased year over year in Canada, it is not improving fast enough to serve the thousands of Canadians on the waitlist for transplant (Canadian Blood Services, 2016).  The status of the current organ supply seems to be failing to meet the demands of our population (Canadian Institute for Health Information, 2014). This realization requires attention and action to improve the health outcomes of Canadians awaiting transplant.  Transplant can drastically improve the quality of life and extends life expectancy (Canadian Blood Services, 2016).  For example, the life expectancy of a kidney transplant recipient will nearly double compared to if they remained on dialysis (Canadian Blood Services, 2016).  Due to success rates of solid organ transplantation, it is becoming the first choice for treatment of advanced heart, lung, liver and kidney failure (Keenan et al., 2002).   The economic benefits of transplantation are equally undeniable. Chronic disease management in relation to organ failure places an incredible burden on the health care system (Canadian Blood Services, 2016). According to the Canadian Blood Services (2016) the annual cost per patient for dialysis ranges from $56,000 to $107,000. To compare, a kidney transplant costs $66,400 in the first year post-transplant and $23,000 each consecutive year for anti-rejections drugs and follow–up care (Canadian Blood Services, 2016).  Therefore, starting in year two post transplant, the health care system saves $33,000-$84,000 in what would have been the annual cost of dialysis (Canadian Blood Services, 2016). Not to mention, the return to work of many recipients means 7 contribution to Canada’s gross domestic product and additional income tax revenues (Canadian Blood Services, 2016).   There was little information found regarding cost/benefit analysis for transplantation of the other organ groups however, the transplantation of heart, liver or lungs could avoid multiple intensive care unit stays that are likely to occur with advanced organ failure (Canadian Blood Services, 2016).  In order to better appreciate the opportunities for improvements in organ donation/procurement, a deeper understanding of the current structure of donation and transplant in Canada is needed.  In Canada, provinces and territories are responsible for donation and transplantation within their geographic region (Canadian Blood Services, 2016).  Various organizations provide national support such as Canadian Blood Services, Health Canada, Canadian Institute of Health Research and Accreditation Canada (Canadian Blood Services, 2016).   However, each province or territory relies heavily on it’s organ procurement organizations, physicians, surgeons, OR’s, ICU’s, ER, laboratories, donation and transplant coordinators and hospital administrators in order to realize donor potential and successfully perform organ transplants (Canadian Blood Services, 2016).  Across Canada but varying from province to province, two types of solid organ donation exist; living donation and deceased donation (Canadian Blood Services, 2016).  As of 2005, deceased donation expanded beyond donation after neurological death to include donation after cardio-circulatory death (Shemie et al. 2006a; Canadian Blood Services, 2016). Below I will explain the different types of solid organ donation, as they exist in Canada and how they are being utilized to help meet the needs of Canadians on the transplant waitlist.  8  Living Donors   Donation of organs like the kidneys and the liver can come from both a living or deceased donors (Ohler, & Shafer, 2006).   Living kidney donation refers to the donation of a single kidney from one living person to another (Ohler, & Shafer, 2006). Living liver donations are less common and not performed in every province due to a lack of resources and mixed attitudes regarding level risk to the living donors during the procedure (Canadian Blood Services, 2016). There are many benefits to the living donor program. For kidney and liver recipients on the waitlist, living donation means waiting less time to receive a lifesaving organ (Canadian Blood Services, 2016). Living donation provides recipients the opportunity to receive a transplant before they begin to deteriorate to the point of being taken off the waitlist or dying while waiting for a transplant (Canadian Blood Services, 2016).  Canadian living donor rates are among the highest in comparison to other nations around the world (Norris, 2014).   Unfortunately, not all organs can be retrieved from living donors, as a donor’s life cannot be sustained without a heart, lungs or pancreas. Therefore, exploring options for deceased donors is necessary and may prove to be more prolific, as a single deceased donor has the opportunity to donate heart, lungs, liver, kidneys and pancreas to someone in need.  Deceased Donors   There are two types of deceased donation. The first relates to donors that have suffered a non-survivable brain injury and are rendered deceased by neurological determination of death (NDD) (Canadian Institutes of Health Research, 2014).  “Brain 9 death” can result from a number of complications, for example cerebrovascular accidents, overdose leading to anoxia, or trauma (Goila & Pawar, 2009).   Different from severe brain damage, a diagnosis of brain death must be determined through a series of clinical exams (Ohler, & Shafer, 2006). Two physicians must assess for the absence of brain stem reflexes and determine the absence of respiratory efforts in the presence of hypercarbia (Shemie et al., 2006b). Clinical exams will need to be verified by brain imaging if any confounding factors exist that would interfere with completing the clinical exam (Shemie et al., 2006b). Confounding factors include hypothermia (core temperature <34 degrees Celsius), un-resuscitated shock, severe metabolic disorders, drug intoxications and peripheral nerve/muscle dysfunction neuromuscular blockade (Shemie et al., 2006b). In these cases, brain death should be confirmed using radionuclide angiography, cerebral arteriography, MRI, or a nuclear brain scan (Goila & Pawar, 2009).  The second form of deceased donation is referred to as donation after cardio-circulatory death (DCD) (Canadian Institutes of Health Research, 2014).  In 2005, DCD was introduced in Canada and guidelines were created for its clinical use (Canadian Blood Service, 2016). This type of donation may be considered when a patient is thought to have a non-survivable illness or injury, dependent on life support, family intends to withdraw care and it is likely that death would occur quickly after withdrawal of life support (Shemie et al., 2006a).  It is important to note, the decision to withdrawal life sustaining care is made independently from any decisions to donate (Shemie et al., 2006a).  However, it is recommended that the opportunity to donate be made available in discussions about end of life considerations in order to honor the wishes of the patient (Shemie et al., 2006a). If family has made the decision to withdraw life support and it is 10 their wish to explore the opportunity to donate, at the time of withdrawing life support two physicians are required to declare death for the purpose of donation. After death is confirmed, the patient is taken to the OR quickly to recover organs (Browne, 2010). DCD has resulted in the largest increase in deceased donor donation worldwide (Squires et al., 2014).  The process of DCD has however, created some ethical tensions for many health care providers (Keenan et al., 2002).  Keenan et al. (2002) found that a nurse’s acceptance of organ donation for these patients was strongly linked to their acceptance of the withdrawal of life support. Support for families is critically important with all forms of donation as the opportunity for organ donation generally comes as a result of an unexpected death or injury (Mills & Koulouglioti, 2016). It is important to recognize that families often struggle with the transition of goals of care from actively treating to focusing on a peaceful passing (Daly, 2006). As health care professionals, we can help families in this transition by seeking to understand the value and beliefs of the patient and family and honoring their wishes (Daly, 2006).   Consent for Donation in Canada  In Canada, explicit consent from next of kin is required before donation can proceed (Canadian Blood Services, 2016).  Explicit consent is different from presumed consent that states everyone is considered a donor unless they opt out of donation (Rithalia et al., 2009). The question has been raised whether presumed consent would increase donation rates, according to a systematic review completed by Rithalia et al. (2009) this is not the case.  Presumed consent alone was unlikely to explain the variation in donation rates between countries (Rithalia et al., 2009).  Coppen, Friele, Gevers & Van 11 Der Zee (2010) showed that families wanted to be involved in end of life decisions. Family involvement in decisions around donation was shown to contribute to feelings of trust in the health care system (Coppen et al., 2010).  In a study comparing presumed consent and explicit consent, donation rates were actually higher when families were aware of the deceased registered intent to donate (Coppen et al., 2010).  In Canada, citizens can register their decision to donate, however the process of informed consent is required to be completed by the legal next of kin (Canadian Blood Services, 2016). Although 91% of the population in Canada stated they supported donation, only half of the population had registered their intent to donate (Canadian Blood Services, 2016).  In recent years, much of organ donation and transplantation system improvement work has focused on public awareness and encouraging Canadians to register their decision to donate (Canadian Blood Services 2016).   Registering intent to donate was also seen as helpful for health care professionals in initiating conversations around donation during end of life consideration (Canadian Blood Services, 2016).  Closing the Gap  Improvement strategies have been suggested as a result of a review of current practice and comparisons made with other organ donation programs in neighboring nations (Canadian Blood Services, 2016).  The Canadian Blood Services (2016) identified a number of areas that have been addressed in order to increase the rates of organ donations in Canada including the institution of donation champions, increased public awareness, national recipient registration and advancements in transplant technology (Canadian Blood Services, 2016).  Donation “champion” physicians have 12 been implemented in a number of provinces to act as leaders in donation and provide education and consultation at their perspective sites (Canadian Blood Services, 2016).  Public awareness and encouraging Canadians to register their decision has been a major focus for many organ procurement organizations across the country (Canadian Blood Services, 2016). The addition of web-based registration of decisions has made the process of registering intent to donate more streamlined for many Canadians (Canadian Blood Services, 2016).  The Canadian Transplant Registry (CTR) was developed in order to support provincial allocation and facilitate organ sharing across the country (Canadian Blood Services, 2016). CTR helps to identify the patients with advanced organ failure that are in need of urgent transplant across Canada (Canadian Blood Services, 2016).   Advances in new technology known as “ex- vivo” has led to increased utilization of otherwise marginal organs and improved the quality of organs for donation (Canadian Blood Services, 2016). Ex-vivo technology allows the lungs to be perfused and oxygenated outside the body for a period of time after retrieval in order to optimize their function (Canadian Blood Services, 2016). Over the last decade various strategies have been employed to improve donation and transplantation rates, however, the need for transplants remains great (Canadian Blood Services, 2016).   In order to address any unrealized potential, it is critical to consider all of the people involved in the donation process.  The donation process begins from identification and referral of a potential donor, introducing the opportunity of donation to family, obtaining informed consent, managing of the donor care and supporting donor families in the transition of goals of care (Daly, 2006).  As a result of a recent review, Canadian Blood Services (2016) suggested examining the capacity of those working in critical care 13 areas as a way to capture unrealized opportunities.  Nursing currently plays an important role in the donation process and contributes to donation rates in Canada.   Nurses Role in Donation  A critical care nurse’s role is multidimensional; they help to save the lives of the critically ill, work closely with many different healthcare disciplines, and support families in times of loss and grief (Jawoniyi & Gormley, 2015; Mills & Koulouglioti, 2016). A nurse’s role in the ICU is first and foremost to preserve the life of their patients (Jawoniyi & Gormley, 2015). However, when a patient’s prognosis is grim or a brain death diagnosis has been made, nurses also have the responsibility of identifying potential donors (Jawoniyi & Gormley, 2015).  Providing care and support to families in times of loss is a critical component of the nursing role (Mills & Koulouglioti, 2016). Nurses have been identified as some of the most trusted professionals in health care, which explains why they are often the main point of contact for families in the intensive care unit (Hebert, Moore, & Rooney, 2011; Mills & Koulouglioti, 2016). Nurses tend to form intimate relationships with families and due to the unique role nurses play in times of loss, they are best positioned to initiate conversations around organ donation (Daly, 2006; Mills & Koulouglioti, 2016). Nurses already are tasked with providing communication and support to families helping them to understand prognosis and guide decision making that is in line with the patient’s wishes (Mills & Koulouglioti, 2016). The Canadian Nurses Association (2000, pg. 2) states that nurses “have an ethical responsibility to respect and promote the autonomy of clients and help them to express 14 their health needs and values, and obtain appropriate information and services”. This includes the provision of information around end of life options including organ donation (Shemie et al., 2006a). The option to donate is a right of every patient and family, and should be honored by the healthcare team at the end of life (Tamburri, 2006). Canadian Nurses Association (2000) explains that nurses can help support donation through collaboration with families and transplant teams, having awareness of policy and procedures around organ donation and understanding their role in procurement of organs.   Nurses are an essential link in organ procurement; as health professionals they are responsible for referring any potential donors to their local organ donation organizations (Ingram, Buckner, & Rayburn, 2002; Human Tissue Gift Act, RSBC 1996). Unfortunately, a failing of health care professionals to identify and refer potential donors and initiate conversations with families is a major barrier to organ donation (Daly, 2006).    In this paper I explore the factors that influence nurses’ engagement in donation behaviors including identifying and referring donors and initiating conversations around donation opportunities with families.  Theoretical Perspective  The Theory of Planned Behavior developed by Ajzen (1991), explains that an individual’s behavior is related to their intention to perform the behavior. Therefore, a person’s behaviors can be predicted by their intention to engage in a behavior (Ajzen, 1991). According to this theory, intentions are influenced by a person’s attitudes toward the behavior, subjective norms including social, cultural and organizational norms and perceived behavioral control (Ajzen, 1991).   Applying this model to health related 15 behaviors such as blood donation has been beneficial in targeting the predictors that precede an individual’s intention to donate blood (Rocheleau, 2013). A person’s attitudes, norms and perceived behavioral control are strongly associated with a person’s decision to donate blood (Rocheleau, 2013). Figure two below depicts how the Theory of Planned Behavior can be applied to nurses’ behaviors related to organ donation.  It describes that there are three elements: attitudes, social norms and perceived behavioral control that influence nurses’ intentions and pro donation behaviors. Figure. 2 Theory of Planned Behaviour Applied to Nurses and Organ Donation   Considering the theoretical perspective that persons’ behaviors are guided by their intentions, the TPB may help to understand the factors that influence nurses’ intention to participate in the organ donation process. Having conducted a scoping review of the literature, guided by the theoretical model of the TPB, I will critically analyze nurses’ attitudes, perceived behavioural control and social norms around donation.  Using the TPB model I will consider how these elements may influence nurses’ willingness to 16 identify and refer potential donors, initiate conversations with families about donation and participate in caring for the donors and their families.  Literature Search Strategy  The elements of the TBP helped guide and organize my search strategy in CINAHL and PubMed.  Search terms used in both CINAHL and PubMed were “nurse attitudes” AND “organ procurement” AND “theory of planned behaviour” limited to English language only, and published between year 2000 and 2017. Seventeen relevant articles were found that discussed organ donation, included nurses or nursing students and included at least one element of the TPB: attitudes, knowledge/perceived behavioural control and/or social norms. The 16 articles selected will be described in this paper.  Findings Of the 16 studies, one was a qualitative phenomenological study, one was a mixed methods study, and 14 were quantitative (see Table 1).  I examined each of the studies for the quality of their methodology including their internal validity, external validity and instruments and analysis used.  In my analysis of the studies selected, several had small sample sizes, were conducted in single health centers, had poor response rates and the used of convenience samples (refer to Table 1). Many of the studies examined were conducted in a non-western context and therefore may be difficult to transfer results to the western world (refer to Table 1).  Quality concerns are listed in more detail in Table 1 and will be discussed throughout the findings. I am cognizant that these limitations may have affected the internal validity and generalizability of the findings. 17  Table 1: Study Information STUDY INCLUDED DESIGN TYPE SETTING COUNTRY QUALITY CONCERNS Boey, 2002 Cross sectional/ Correlational Teaching hospital- Various departments within hospital Hong Kong -Voluntary Participation (possible voluntary response bias) -Only 1/3 of nurses invited actually participated -Actual number of nurses with positive attitudes might be less than estimated in the study  Cebeci,  Sucu, & Karazeybek, 2011  Descriptive Two nursing schools (Antalya and Akeski Health School) Turkey -Unclear how students were sampled, appears to be voluntary participation -Unclear if questionnaires were validated -Limited generalizability outside of study setting Collins, 2005 Descriptive  Single ICU United Kingdom -Small study sample (37 nurses) from a convenience sample - Conducted in a single centre, generalizability limited  Flodén et al., 2011 Qualitative-Phenomenological  General ICU in six different hospitals (wide geographic area) Sweden -Participants were selected by the unit managers and were thought to already hold positive attitudes toward donation -Participants were recruited at 2 different time periods (year 2006-2010) -Researcher had to interpret what the participants were trying to communicate -Suggested need for future quantitative research before generalizing findings Keenan et al., 2002   Descriptive Nurses (no designation or department given) Canada -small portion of the sample were nurses 38% -sampling bias (used consumer database to randomly sample) Kent, 2002 Cross sectional Adult Acute Care areas in two health United Kingdom -Poor response rate 42% potential non- response 18 regions bias Kent, 2004 Mixed Methods Critical care nurses in two health regions United Kingdom -Small sample size (n=30) may affected generalizability  - Voluntary convenience sample -Researcher may have influenced the interviews responses -Potential for participants to hear one another responses because of the location the interviews were held Krishna, 2015 Non-experimental- descriptive Staff nurses at a single hospital  Spain -Single setting generalizability is limited  - Hasty questionnaire completion as they were completed after work hours by participants (potential false positives) Kurz, 2014 Quasi experimental- Pretest/ posttest Nursing students- Urban university in east coast USA  -Convenience sample on a volunteer basis, not randomized -Small sample size (control group n=47, research group n=33) -Control group were junior nurses, research group were senior nurses -Length of time between pre and post test was too lengthy Lin, Lin, Lam, & Chen, 2010 Prospective-descriptive Three ICU departments  ( General Surgery, Neurosurgery, Neurology) Taiwan -tool validation not specified -Small sample (n=12), poor generalizability -sampling bias (not clear how they selected participants) López-Montesinos et al., 2010  Descriptive Concurrent Third year nursing  students at University of Murcia Spain -Attitudes favourable prior to study, poor generalizability outside study context Martínez-Alarcón et al., 2009  Descriptive Questionnaire Diploma nurses at three different Universities Spain -Limited generalizable outside of country of study  McGlade & Pierscionek., 2013 Quantitative- Pretest/Post test Second year Nursing students at University of Ulster Ireland -pretest may have influenced post test results -potential influence of external factors not controlled (ex. social media) 19 - Convenience sampling method  -Conducted in a single centre, generalizability limited. Meyer, Bjørk, & Eide, 2012 Cross sectional- survey 28  Norwegian donor hospital ICU’s Norway -Questionnaire had low internal validity on the ethical knowledge scale -No data collected on those that declined to participate. Roels, Spaight,  Smits, & Cohen, 2010 Quantative -nonexperimental Critical care units in 245 Hospitals (including general ICU, Coronary care, Surgical ICU, Neuro ICU, ER or trauma units, Neonatal and Pediatric ICU) 11 Countries (Australia, Belgium, Croatia, Finland, France, Israel, Italy, Japan, Norway, Poland and Switzerland) none Shabanzadeh, Sadr, Ghafari, Nozari,  & Toushih, 2009 Cross sectional Nurses from 24 ICU’s Tehran -Did not indicate if questionnaires were validated tools -No information regarding the number of nurses who chose not answer questionnaire or whether participation was voluntary or mandatory    Next, I organized the findings according to the elements of the TPB to reveal the areas that require attention in order to improve nurses’ behaviours toward organ donation.  Eleven of the studies examined nurses’ attitudes toward donation, ten studies examined nurses’ perceived behavioral control related to donation and two studies looked at social norm and donation, as depicted in Table 2 below.    20 Table 2: Studies included in Scoping Review STUDY INCLUDED ATTITUDES TOWARD DONATION PERCEIVED BEHAVIORAL CONTROL- KNOWLEDGE/ SKILLS RELATED TO DONATION SOCIAL/CULTURAL AND ORGANIZATIONAL NORMS RELATED TO DONATION Boey, 2002     Cebeci,  Sucu, & Karazeybek, 2011      Collins, 2005     Flodén et al., 2011       Keenan et al., 2002       Kent, 2002      Kent, 2002      Krishna, 2015     Kurz, 2014     Lin, Lin, Lam, & Chen, 2010      López-Montesinos et al., 2010      Martínez-Alarcón et al., 2009      McGlade & Pierscionek., 2013      Meyer,  Bjørk, & Eide, 2012     Roels, Spaight,  Smits, & Cohen, 2010     Shabanzadeh, Sadr, Ghafari, Nozari, & Toushih, 2009        Attitudes/Perceptions  Eleven of the 16 studies examined attitudes of nurses around organ donation ( see Table 2). Positive attitudes of health care workers toward organ donation improved the national procurement efficiency according to Roels, Spaight, Smits, & Cohen (2010).  In 21 this study, Roels et al. (2010) looked at data retrieved from a donor attitude survey provided to 19,537 critical care health professionals in 11 different countries. Of those surveyed, 13,977 were nurses (Roels et al., 2010). They compared this data to each country’s performance using the procurement efficiency index (PEI) (Roels et al., 2010).  PEI compares organs actually transplanted and deaths from all eligible causes (Roels et al., 2010). A positive correlation was found between nurses’ attitudes and donation performance in this study (Roels et al., 2010). Interestingly, nurses in this study had significantly lower positive attitudes and comfort levels around donation than did the physicians surveyed (Roels et al., 2010). Nurses also reported a higher need for education around organ donation compared to physicians (Roels et al., 2010).  Martinez-Alarcon et al. (2009) conducted a large-scale descriptive study with 721 diploma nurses in Spain from three different universities. A validated questionnaire about organ donation and transplantation including questions related to deceased donation, living donation and organ distribution in Spain was administered with a 98% response rate (Martinez-alarcon et al., 2009). Results indicated that 84 % of students had favourable attitudes toward donation (Martinez-alarcon et al., 2009).  Another large-scale study conducted in Tehran found similar results (Shabanzadeh, Sadr, Ghafari, Nozari  & Toushih, 2009). This study surveyed 418 nurses in 24 ICUs in Tehran and found that 75 % had a favourable attitude toward donation (Shabanzadeh et al., 2009).  The main reason cited for favouring donation was “help to others” (Shabanzadeh et al., 2009, p. 1481).   Boey (2002) surveyed 314 nurses at a single teaching hospital in Hong Kong and found 96% had a favourable attitude toward donation. Nurses here saw donation as a good humanitarian act (Boey, 2002).   A caution, participation in this survey was voluntary therefore, I feel 22 the results could be falsely elevated due to selection bias and perceived desirability with responses (Boey, 2002). A study by Kent (2002) used stratified random sampling of 776 nurses in two health regions in the UK.  Results suggested a strong positive attitude toward organ donation however, response rates on this study were only 42% signifying a potential for non-response bias (Kent, 2002).  Krishna (2015) randomly sampled 102 nurses in a single centre in Trivandrum, India.  A standardized attitudinal scale revealed 98% of nurses had a positive attitude toward organ donation (Krishna, 2015).  A limitation of this study was its generalizability, as it was only completed at a single centre in India (Krishna, 2015).    Four of the studies reviewed examined nurses’ or nursing students’ attitudes towards donation after receiving training or education sessions related on organ donation (Lin, Lin, Lam & Chen, 2010; López-Montesinos et al., 2010; McGlade  & Pierscionek, 2013; Kurz, 2014).  McGlade  & Pierscionek (2013) found that a 33-hour program on organ donation improved understanding of the legal issues around organ donation and willingness to discuss organ donation with their own families. However, there was no change in nurses’ attitudes around donation overall, perhaps because nursing students had a positive attitude toward donation in both pre and post measurements (McGlade & Pierscionek 2013). López-Montesinos et al. (2010) conducted a similar study in Spain implementing a training program on organ donation.  In that study as well, nurses’ attitudes remained positive toward donation with no change in attitude after the training programs (López-Montesinos et al., 2010)..  Kurz (2014) conducted a small quasi-experimental pretest/post-test study looking at the effect of a single organ donation lecture on improving attitudes and knowledge of US undergraduate nursing students. The 23 research group that received the lecture on organ donation had a higher donation registration rate compared to the control group suggesting improved favourable attitude toward donation (Kurz, 2014). A prospective study by Lin, Lin, Lam & Chen (2010) looked at attitudes and knowledge around organ donation of 12 ICU nurses. Two video lectures on organ donation were provided to the nurses; statistically significant gains were noted in knowledge, attitudes and motivation after this training (Lin, Lin, Lam & Chen 2010).   The phenomenological study by Floden, Berg & Forsberg (2011) revealed in more detail the perceptions nurses had around organ donation.  Organ donation was seen to be rare but interesting, an extraordinary commitment and an emotional process (Floden et al., 2011). The importance of maintaining dignity for the donor prior to the OR was seen as imperative, yet challenging for nurses (Floden et al., 2011).   While overall, attitudes towards donation were highlighted as positive, negative attitudes toward donation were highlighted in two of the 11 studies (Boey, 2002; Shabanzadeh et al., 2009). Boey (2002) found that while there was a weak positive correlation between positive attitudes and commitment to donation, there was a strong negative correlation between negative attitudes and commitment to donation.  Negative attitudes were around fears of body mutilation, death as a failure, threatened dignity, uncertainty around brain death testing and decisions to withdraw life support in the case of DCD donors (Boey, 2002).  Fears of damage to the donor in living kidney donors and fears of provoking anger in an already grieving family were also highlighted (Shabanzadeh et al., 2009).  Boey (2002) acknowledged that nurses who held a negative view toward donation might have experienced the negative consequences of organ 24 rejection throughout their careers.  It is important to consider that nurses who currently have a positive attitude toward donation can develop negative feelings toward donation when faced with ethically challenging and morally distressing organ donation cases (Roels et al., 2010).  Perceived Behavioural Control   Ten of the 16 studies looked at nurses’ perceived behavioural control as it relates to organ donation (see Table 2). For the purpose of this review, perceived behavioural control was comprised of nurses’ knowledge of organ donation and skills required to initiate conversations with families about donation and caring for potential organ donors (Ajzen, 1991).  The study by Floden et al. (2011) recognized that caring for a donor and managing the needs of families required advanced nursing knowledge, skills and expertise.  Unfortunately, misunderstandings around brain death have been linked to a failure to donate (Martines-Alarcon et al., 2009).  In a mixed methods study by they examined the level of knowledge that 30 critical care nurses had around organ donation. Nurses felt that being knowledgeable about organ donation was a prerequisite for being involved in the process (Kent, 2004). However, nurses felt that while they had sufficient knowledge around organ donation, they needed support to enhance their confidence level in speaking with families (Kent, 2004). Nurses’ commonly felt ill prepared to manage the emotions of a family grieving during the process of donation (Kent, 2004).  In a large cross sectional study by Shabanzedeh et al. (2009), a questionnaire about organ donation and transplantation knowledge was administered to 418 nurses in 24 hospitals in Tehran.  25 The questionnaire assessed the nurse’s legal knowledge, economic knowledge and knowledge about concepts of brain death (Shabanzedeh et al., 2009).  Seventy percent of participants were not aware of the discrepancy between available organs and people on the waitlist (Shabanzedeh et al., 2009).   Results indicated a misunderstanding of brain death with only 57% of nurses having correct knowledge about brain death (Shabanzedeh et al., 2009).  In a study by Lin, Lin, Lam, & Chen (2010), they administered a questionnaire that examined nurses’ knowledge of brain death, informed consent, the donation process and legality. Two lectures were provided on organ donation and the questionnaire was repeated (Lin et al., 2010).  Prior to the lectures 41% misunderstood brain death and 75% were unclear regarding the process of organ donation (Lin et al., 2010). After the lectures there was a marked increase in nurses knowledge around organ donation (p<0.001) (Lin et al., 2010). Kent (2002) looked at nurses’ willingness to participate in donor identification process. For nursing, knowledge and experience were seen as vital in determining one’s ability to discuss donation (Kent, 2002).  Nurses in this study also felt that approaching families was outside of the “boundaries” of their nursing role (Kent, 2002).  Findings demonstrated the need for further education to correct misconceptions around organ donation (Kent, 2002).   It is worth mentioning that the response rate of this study was poor at 42%, which may attribute to non-response bias (Kent, 2002).  Collins (2005) surveyed a small group of ICU nurses in the UK to examine their level of knowledge around organ donation and determined deficits in their knowledge existed. Only 35% of the nurses surveyed felt prepared to nurse a potential organ donor and 39% felt they could not explain brain death to a family (Collins, 2005). 74% felt the requester should be someone who has established a close relationship with 26 the family, yet not the nurse (Collins, 2005).   It was suggested that potential donors might be overlooked as a result of this lack of understanding around donation and brain death (Collins, 2005). It is worth noting that the study was a small convenience sample and generalizability may be compromised (Collins, 2005).  McGlade & Pierscionek (2013) looked at whether a 33-hour training program on organ donation could improve knowledge and behaviours around organ donation.  Following the program, statistically significant improvements in knowledge were found, specifically around legal issues (McGlade & Pierscionek, 2013).   Post program, nurses reported being more likely to discuss donation with their family (McGlade & Pierscionek, 2013). In this study, nurses responses to the post-test may have been affected by the pretest and presence of external factors such as social media campaigns (McGlade & Pierscionek, 2013). The study by Roel et al. (2010) showed that procurement efficiency rates were positively associated with confidence in discussing brain death.  Nurses in this study had a significantly lower comfort level than physicians around discussing brain death and organ donation (Roel et al., 2010).  Interestingly, Kurz (2014) evaluated the outcome of a single lecture and lab on nurse’s knowledge around donation and found knowledge scores did not change from pre to post test.  This was a relatively small sample of university nurses in the United States of America (Kurz, 2014). Length of time between pre and post-test was cited as a limiting factor as the post-test was administered 3 months after the lecture was delivered (Kurz, 2014).  Meyer, Bjørk, & Eide (2012) looked at behavioural control and focused on nurses’ perceptions of their own competence around donation.  Participants were randomly selected from all Norwegian hospital ICUs (Meyer et al., 2012). Nurses in this study perceived their theoretical and practical knowledge of organ donation to be low 27 (Meyer et al., 2012). This study suggested understanding of brain death, care of the donor and expertise of the nurses might influence families’ decision to donate (Meyer et al., 2012). Nurses felt re-education on the organ donation process was needed at least once a year (Meyer et al., 2012). They found it was difficult to acquire knowledge when organ donation was done so infrequently (Meyer et al., 2012). All of studies reviewed on perceived behavioral control recognized a need for more education for nurses around organ donation (Kent, 2002; Kent, 2002; Collins, 2005;Martínez-Alarcón et al., 2009; Shabanzadeh et al., 2009; Lin, Lin et al., 2010; Flodén et al., 2011; Meyer et al., 2012 ; McGlade & Pierscionek., 2013;Kurz, 2014).   Social Norms  Two of the 16 studies reviewed looked at norms related to donation (see Table 2).   In the study done by Flodén et al. (2011) nurses perceived organ donation to be a part of their professional practice and of the ICU unit culture.  Floden et al. (2011) interviewed 15 nurses in six different hospitals in Sweden.  A phenomenological approach was taken to analyzing the questionnaires and through analysis they found that nurses felt identification of donors did not take place due to a lack of structure and guidelines in their organizations (Floden et al., 2011).  Cebeci, Sucu & Karazeybek (2011) surveyed 309 Turkish nursing students from two different schools. The nurses’ role was seen to help to raise social awareness and influence norms around organ donation (Cebeci et al., 2011).  In this study, most of the students felt nurses were in a position to recognize and initiate conversations around donation (Cebeci et al., 2011).     28 Discussion  In examining the literature, I explored nurses’ attitudes toward organ donation (positive and negative), their perceived behavioural control/ knowledge and skills around organ donation and any social norms that exist in relation to donation.  Finding causal links from each of these elements to donation rates was not the goal of the review but rather to theoretically examine how each of these elements co-exist to influence nurses’ intentions and consequently their behaviours.   The hope is that by improving nurses’ behaviours in recognizing and managing donors it will improve donation rates and the availability of transplantable organs. Flodén, Kelvered, Frid, & Backman, (2006) identified that one of the most crucial ways to increase donation was early donor identification by ICU staff.  Canadian Blood Services (2016) also suggested attempts to improve donation rates should include further analysis of the capacity of the intensive care unit staff.  Attitudes of health care professionals toward brain death can influence the organ procurement process (Cohen, Ami, Ashkenazi, & Singer, 2008).  Kent (2002), Martinez-alacron et al. (2009) and Shabanzadeh et al. (2009) all reported nurses surveyed had positive attitudes toward donation. Nurses were seen as an important link in the process of organ donation and were able to form close and trusting relationships with families, more so than any other health professional (Daly, 2006; Mills & Koulouglioti, 2016). This is important, as families who are undecided about organ donation will often look to nurses for guidance (Boey, 2002).  Nurses who have negative attitudes toward donation were likely to project these onto families and are unlikely to obtain consent for organ donation (Boey, 2002).  Boey (2002) cited a strong negative correlation between negative 29 attitudes and commitment to organ donation.   Findings from the literature suggested negative attitudes tend to be related to fears of body mutilation, mistrust in the brain death diagnosis and decisions to remove life support, as well as experiencing the consequences of organ rejection (Boey, 2002; Shabanzadeh et al., 2009). It is concerning when negative attitude may be derived from a lack of information or misinformation (Boey, 2002).  In an effort to encourage nurses to participate in the organ donation process, it will be crucial to gain a better understanding of negative attitudes toward donation that exist and how misconceptions can be corrected (Boey, 2002). It is also important to recognize that organ donation takes place in an ethically tense field (Floden et al., 2011).  When nurses felt morally distressed during the organ donation process, positive attitudes could be easily shifted to more negative feelings about donation (Floden et al., 2011).    Given this information, debriefing each donation case is important for all staff involved and should be included in donation process (Elliott, Aitken & Chaboyer, 2011). Debriefing allows for the team to highlight any concerns, manage staff stress and identify ethical issues that may arise from each organ donation case (Elliott et al., 2011). Knowledge and skills around donation was thought to be lacking in all of the studies that looked at perceived behavioral control (refer to Table 2). Nurses were seen to be in an ideal position to recognize donors and initiate conversations around donation with families (Daly, 2006; Mills & Koulouglioti, 2016). They were viewed by donor families as being the most effective at providing support to families throughout the donation process (Elliott et al., 2011).  Unfortunately, nurses unanimously felt the need for more education around the organ donation process, brain death diagnosis and managing a grieving family (Kent, 2002; Kent 2004; Meyer et al., 2012). Managing of 30 brain dead patients and caring for their families was seen to require advanced knowledge and skills according to Floden et al. (2011). Therefore, nurses must have a clear understanding of brain death and donation themselves before they are able to confidently explain donation to families (Elliott et al., 2011). Nurses found it challenging to acquire knowledge around organ donation when it was done so infrequently in many critical care areas (Meyer et al., 2012).  Those working in critical care environments recognized a need for additional education around organ donation and recommended re-education on an annual basis (Meyer et al., 2011).  Given the lack of knowledge around donation reported by the nurses in the studies, a focus should be placed on initiating or improving organ donation education for the nursing discipline (Roels, 2010).  Only two articles from the literature reviewed discussed social norms (refer to Table 2). Findings from Floden et al. (2011) reflected that nurses perceived organ donation to be a part of their professional practice and part of the ICU unit culture. As a discipline, nursing was identified as being responsible for raising social awareness and influencing norms around organ donation (Cebeci et al., 2011).  However, nurses felt that identification of donors was often missed due to a lack of organizational structures in place (Floden et al., 2011). Kent (2002) suggested that hospital protocols around donation did exist, however, the awareness and use of them was low among nurses.  In order to improve the process of identifying donors, it might be useful to examine the current organizational structures that exist in each hospital and health authority. Currently, laws exist that encourage the identification of potential donors as a regular part of nursing practice (Human Tissue Gift Act, RSBC 1996). In British Columbia, the Human Tissue Gift Act implies that “hospitals and facilities are required to notify the Transplant Society 31 of an impending death or death of a person under 75 years of age” (Human Tissue Gift Act, RSBC 1996). British Columbia’s Human Tissue Gift Act specifically recognizes that nurses are able to legally obtain consent from next of kin for donation (Human Tissue Gift Act, RSBC 1996). Various provinces in Canada have similar acts to mandate the referral of potential donors and encourage donor identification as a part of everyday best practice (Canadian Blood Services, 2016).   Implications for Nursing Practice   Nursing represents the largest percentage of health care professionals, yet has been an under-utilized resource in the promotion of organ donation (Kurtzman, Dawson, Johnson  & Sheingold, 2010; McGlade & Pierscionek, 2013). Nurses can play an important role in addressing the organ shortage in Canada by simply identifying potential donors and supporting families through the organ donation process (Canadian Institutes of Health Research, 2014).  In applying the principles of the TPB, nurses’ participation in the organ donation process may be predicted by their attitudes, knowledge and skills related to donation and the social norms that exist around donation (Ajzen, 1991). Information gleaned from the literature review suggests nurses have a need for additional education to improve their knowledge and skills around identifying and managing donors, as well as caring for the needs of a grieving family (Kent, 2004; Collins, 2005; Roels, 2010; Meyer et al., 2011).  Suggestions for how organ donation knowledge can be disseminated into practice will be introduced throughout this section.   The American Association of Critical Care Nurses recommended that organ donation be included in the critical care curriculum, yet few schools have included this 32 instruction (Kurz, 2014).  It was found that a nurse’s perception of their own abilities to discuss donation was determined by their knowledge and skills on the subject (Kent, 2002).  Providing nurses with guidance and tools for discussing organ donation may improve their comfort level and willingness to engage in such conversations (Jawoniyi & Gormley, 2015). Confidence in discussing brain death with families has been associated with greater procurement efficiency (Roels et al., 2010).  Shemie et al. (2006a) claim the opportunity to donate should be made available in discussions about end of life considerations in order to honor the wishes of the patient. Therefore, the topic of organ donation should be incorporated into end of life care instruction for ICU/ER nursing students (Kurz, 2014).  Education should be comprised of various forms of knowledge including of social, theoretical and practical knowledge in order to have maximum benefit for the learner (Meyer et al., 2011). While education alone may not be able to change attitudes, it can seek to address negative attitudes fueled by misconceptions or misinformation (Ingram et al., 2002). Misconceptions highlighted around organ donation included fears of body mutilation, mistrust in the brain death diagnosis and decisions to remove life support (Boey, 2002; Keenan et al., 2002).  These misconceptions along with any other ethical dilemmas surrounding donation should be explored throughout the course content (Roels et al., 2010; Krishna, 2015).  Nurses working in-hospital, specifically critical care areas need to be appropriately educated on organ donation (Collins, 2005). Meyer et al. (2012) suggested organ donation education could be implemented in-hospital through annual or bi-annual education sessions in critical care areas. Education programs that are guided by the TPB and address attitudes, knowledge and skills and social norms have proven to be beneficial 33 in influencing nurses to participate in organ donation (Lin, Lin, Chen & Lin, 2014).  Success of organ donation is closely tied to the knowledge and skills nurses attain identifying and referring donors (Roels et al., 2010). Roels et al. (2010) suggest the use of interactive workshops that guide nurses through the process of identifying donors, caring for a grieving family and provide communication tools for discussing donation.  Canadian Blood Services also offers a guide to end of life conversations that can be provided to nurses (Shemie et al., 2017). This guide includes valuable information on how to offer the opportunity for donation to families (Shemie et al., 2017).   Cebeci et al. (2011) suggested that many potential donors are lost due to a lack of communication and knowledge. The act of role-playing clinical scenarios with families was suggested to help nurses initiate conversations about organ donation (Kurz, 2014). The goal would be to help nurses in finding strategies to attend to families in grief and support them through end of life options (Kurz, 2014).  Nurses have been identified as being responsible for raising social awareness and influencing norms around organ donation (Cebeci et al., 2011). In BC, efforts to improve organ donation have focused mainly on increasing public awareness and recruiting site-specific physician champions (Canadian Blood Services, 2016).  Aside from improving education for nurses related to donation, the creation of nurse champions for organ donation could prove to be beneficial (Tamburri, 2006). Nurse champions have been used in many areas of health care in order to diffuse various best practice initiatives (Ploeg et al., 2010). Nurse champions for donation could encourage the sustainability of continued education and competencies around organ donation and empower other nurses to become involved in the process. Nurses are well suited to act as champions because they 34 understand the complexity of their unit environment and organization (Ploeg et al., 2010).  Nurse organ donation champions could effectively engage fellow nursing colleagues through education and mentorship and tailor donation guidelines and policies to meet the needs of their organization (Ploeg et al., 2010).    Knowledge Translation and Future Research Dissemination of the findings from this review will require identifying the appropriate audience and adapting the message to that audience (Canadian Institutes of Health Research, 2016).  Stakeholders that may have interest in the findings of this scoping literature review would be the BC Transplant Society and other organ donation organizations across the country, Critical Care Educators and the program directors of the Critical Care Certification Program at the British Columbia Institute of Technology (BCIT). Assuming that BC Transplant Society has interest in addressing how nurses can help to improve donation rates, we could work with BC Transplant Societry, BCIT and Critical Care Educators to adapt the organ donation education to their local context.  This would consist of understanding what is currently being taught around organ donation, and seeking to understand the learning needs of nursing staff and students. I would suggest future research be conducted in a local, provincial or national context.  A number of the studies reviewed were conducted in non-western countries and the results may not be generalizable outside of their place of study (see Table 1).  Additionally, the studies reviewed looking at attitudes and perceived behavioural control of nurses included nurses in critical care areas as well as staff nurses and nursing students.  I would suggest future 35 primary research should be conducted solely with critical care nurses.  Presumably, the perceptions of nurses may differ in different care setting and depending on the experiences they have had with end of life care and organ donation.                       36 References  Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50, 179-211.   Benson, E. P. (2004). Online learning: A means to enhance professional development. Critical Care Nurse, 24(1), 60-63.  Boey, K. W. (2002). A cross-validation study of nurses’ attitudes and commitment to organ donation in Hong Kong. International Journal of Nursing Studies, 39(1), 95-104.   Browne, A. (2010). The ethics of organ donation after cardiocirculatory death: Do the guidelines of the Canadian council for donation and transplantation measure up? Open Medicine : A Peer-Reviewed, Independent, Open-Access Journal, 4(2), e129.  Canadian Blood Services (2016). Organ Donation and Transplantation in Canada. System Progress Report 2006-2015. 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