RESEARCH doi: 10.1111/nicc.12128
Attitudes towards organ donor advocacy among Swedish intensive care nurses Anna Forsberg, Annette Lennerling, Isabell Fridh, Magnus Rizell, Charlotte Lovén and Anne Flodén ABSTRACT Objectives: To explore the attitudes of Swedish intensive care nurses towards organ donor advocacy. Background: The concept of organ donor advocacy is critical to nurses who care for potential donors in order to facilitate organ donation (OD). Design: A retrospective cross-sectional study was employed. Methods: Inclusion criteria in this survey were to be a registered nurse and to work in a Swedish intensive care unit (ICU). Participants were identified by the Swedish association of health professionals. A number of 502 Swedish ICU nurses answered the 32-item questionnaire Attitudes Towards Organ Donor Advocacy Scale (ATODAS), covering the five dimensions of organ donor advocacy: attitudes towards championing organ donation at a structural hospital level, or at a political and research level, attitudes towards actively and personally safeguarding the will and wishes of the potential organ donor, or by using a more professional approach and finally to safeguard the will and wishes of the relatives. Data were analysed with the SPSS version 18⋅0 and the results were assessed by using Student’s t-test and post hoc test, analysis of variance (ANOVA), 𝜒 2 , Pearson’s correlation and regression analysis. Results: The most favoured advocacy action was safeguarding the POD’s will and wishes by a professional approach, closely followed by actively and personally safeguarding the POD’s will and wishes. Nurses at local hospitals reported a more positive attitude towards organ donor advocacy overall compared with nurses at larger regional or university hospitals. Important factors leading to positive attitudes were seniority, working experience, participating in conversations with relatives, caring for brain-dead persons and private experiences from OD or organ transplantation. Conclusions: Intensive and critical care nurses with short working experience in university hospitals showed the least positive attitude towards organ donor advocacy. This is problematic because many ODs and all transplantations are performed in university hospitals. Relevance to clinical practice: This study emphasizes the importance of organizing the care of PODs and their relatives in a way that promotes advocacy. Key words: Advocacy • Brain death • Intensive and critical care nurses • Nursing developments • Organ donation
BACKGROUND Authors: A Forsberg, R.N., Professor, Department of Health Sciences, Lund University and Department of Transplantation and Cardiology, Skåne University Hospital, Lund, Sweden; A Lennerling, R.N., PhD, Associate Professor, The Transplant Institute, Sahlgrenska University Hospital and Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; I Fridh, R.N., PhD, Senior Lecturer, School of Health Sciences, University of Borås, Borås, Sweden; M Rizell, MD, PhD, Transplant Surgeon, The Transplant Institute, Sahlgrenska University Hospital and Department of Surgery, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; C Lovén, R.N. Transplant coordinator, The Unit for Organ and Tissue Donation, Sahgrenska University Hospital, Gothenburg, Sweden; A Flodén, R.N., PhD, Senior Lecturer, School of Health Sciences, Jönköping University, Jönköping, Sweden Address for correspondence: Dr A Flodén, Senior Lecturer, School of Health Sciences, Jönköping University, Box 1026, SE-551 11 Jönköping, Sweden E-mail: anne.fl[email protected]
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The concept of organ donor advocacy is critical to nurses who are faced with the challenge of caring for potential donors in order to facilitate organ donation (OD). A literature review in this area refers to publications before or after 2005. The first phase, 1988–2005 represents the first 17 years of brain death (BD) legislation in Sweden. Even if still relevant because of legislation, many of these studies are a bit dated and therefore we simply summarize the research during this period focused on four areas: the donor, the relatives, the health care professionals and ethical considerations. Studies after 2005 have focused on attitudes towards OD among health care professionals. Specific behaviour among intensive care unit (ICU) © 2015 British Association of Critical Care Nurses • Vol 20 No 3
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staff is significantly associated with consent to OD or decline of OD (Flodén et al., 2006; Sanner, 2007; Cohen et al., 2008; Sharp, 2009; Jacoby and Jaccard, 2010). Several studies are available that measure knowledge and attitudes towards OD among ICU staff (Kim et al., 2006a, 2006b; Alghanim, 2010; Lima et al., 2010; Lin et al., 2010; Roels et al., 2010). Many of these were carried out in non-European contexts and the results can therefore be difficult to transfer to a western context. However, a common feature is their focus on educational issues. There is also a strong focus on attitudes towards the actual phenomenon of OD rather than attitudes towards actions in relation to OD. An example of this is organ donor advocacy behaviour. In three studies aimed at in-depth exploration of ICU nurses’ perceptions of experiences in the area of OD from the perspective of caring for potential organ donors (PODs), Flodén et al. answered the research question: how do experienced ICU nurses perceive OD as a phenomenon and the situation based on experiences of caring for PODs (Flodén and Forsberg, 2009; Flodén et al., 2011c; Flodén et al., 2011b). Their findings revealed that caring for a POD is a highly demanding task, emphasizing the importance of preserving the deceased person’s dignity by adopting advocacy behaviour. Further, organ donor advocacy was found to be of crucial importance for the care of a POD and his/her relatives in the ICU. They also developed and tested a questionnaire designed to explore attitudes towards organ donor advocacy (ATODA) among ICU nurses (Flodén et al., 2011a). As there is a need to expand the current opinion of the organ donor advocacy experience, and deepen our understanding of attitudes towards the care of a potential donor, e.g. organ donor advocacy within the ICU a survey was required.
AIMS OF THE STUDY The aim of this study was to explore the attitudes of Swedish ICU nurses towards organ donor advocacy. The context of OD in Sweden is presented in Box 1.
BOX 1 THE SWEDISH CONTEXT OF ORGAN DONATION Approximately 90 000 persons die every year in Sweden. During 2012, 248 persons were diagnosed as brain dead and among these, 212 persons were identified as PODs with 141 donations being performed from brain-dead donors (The National Board of Health and Welfare, 2012). In Sweden, brain death (BD) legislation is understood as whole BD. The first legislation that defined death was introduced in Sweden in 1988 (SFS, 1987:269). Clinical neurological examination is the gold standard in Sweden for performing BD diagnostics.
© 2015 British Association of Critical Care Nurses
When a patient is declared brain dead the ICU physician approaches the relatives and asks if the will of the deceased regarding OD is known. Sweden has an opt-out and presumed consent legislation. According to the Swedish Transplantation Act, the standpoint of the deceased to OD is paramount. The last expressed wish is valid. Consent is presumed in cases where the wish of the deceased is unknown. Next of kin have the right of veto only in cases where the wishes of the deceased are not known (SFS, 1995:831; SOSFS, 2009:30 (M); SOSFS, 2012:15).
Flodén et al. (2011a) have defined organ donor advocacy as well as the construct of ATODA, that we rely on in this study, as described in Box 2.
BOX 2 DEFINITIONS OF POTENTIAL ORGAN DONOR AND ORGAN DONOR ADVOCACY The concept of potential organ donor is used to denote a patient who is declared dead, where death is confirmed by criteria for BD, treated by means of a ventilator in an ICU and is considered medically suitable to become an organ donor, but where a decision about OD has not yet been made (The Swedish Council for organ and tissue donation, 2010). In this article, the terms next of kin/relative/family/family members are used synonymously. The term nursing will refer to the discipline, unless otherwise stated. Organ donor advocacy is stated as: ‘It is the ICU nurse’s own decision whether he or she is in favour of or against participating in OD and caring for the potential or actual donor, as well as preserving, representing and safeguarding the donor’s and his/her relatives’ rights, best interests and values after death’ (Flodén et al., 2011a, p. 66).
Organ donor advocacy includes three principle dimensions: safeguarding the potential donor’s will and wishes, safeguarding the will and wishes of the potential donor’s relatives and championing social justice. Different characteristics of advocacy with patients are already well-documented but not in relation to OD and the care of the POD in the ICU environment.
METHODS Study design A retrospective cross-sectional study was employed.
Sampling and recruitment Inclusion criteria for participating in this study were to be a registered nurse and to work in a Swedish ICU. Participants were identified from an existing register administered by the Swedish Association of Health Professionals (SAHP). The SAHP is a politically independent trade union and professional organization for 127
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nurses ensuring that no potential conflict of interest were present. Nurses not registered with the SAHP were not available for inclusion. A random sample of 50% of the ICU nurses from the SAHP member register was included by an administrator picking every second person in the register listed by names from the first to the last letter in the alphabet. The sample was representative of all ICU nurses in Sweden as the informants were recruited from all available ICU sites.
Data collection methods In this study we used the instrument Attitudes Towards Organ Donor Advocacy Scale (ATODAS). This instrument is reported in detail elsewhere (Flodén et al., 2011a). The ATODAS includes 32 items and was used in its original form. It was not piloted for this particular survey as it is well tested in a similar population, context and culture as presented by Flodén et al., 2011a. The content validity index (CVI) for the entire ATODAS was 82%. Inter-item correlations ranged from 0⋅78 to 0⋅42 and the Cronbach’s alpha coefficients showed internal consistency ranging from 0⋅62 to 0⋅90. All factors have eigenvalues greater than 1⋅0. The total scale variance explained by the five factors was 41⋅9% (Flodén et al., 2011a). Responses were scored on a 6-point scale ranging from strongly disagree (1) to strongly agree (6). Scoring was reversed for one negatively worded item so that a high score reflected strong support for advocacy. Championing social justice involves advocating at a macro social level, which on the one hand, may involve a structural level at the hospital where one works and on the other hand, a political or research level. Thus, it is possible to advocate on two different macro social levels in relation to OD. At a micro social level, it is also possible to advocate in relation to the donor’s wishes both in a clearly action-oriented way and by adopting a professional but less active approach. Finally, the structure was also covered at the micro social level by a seven-item factor measuring advocacy in relation to the donor’s relatives. In conclusion, ATODAS is explained by the following five factors described in box 3.
BOX 3 THE FIVE DIMENSIONS OF THE ATTITUDES TOWARDS ORGAN DONOR ADVOCACY-SCALE 1. 2. 3.
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Attitudes towards championing OD at a structural hospital level (ATODA-SHL) (10 items). Attitudes towards championing OD at a political and research level (ATODA-PRL) (4 items). Attitudes towards actively and personally safeguarding the will and wishes of the POD (ATODA-APS) (5 items).
4.
5.
Attitudes towards safeguarding the potential donor’s will and wishes by a professional approach (ATODA-SPPA) (6 items). Attitudes towards safeguarding the will and wishes of the relatives (ATODA-SWR) (7 items).
The ATODA questionnaire was by the SAHP anonymized and sent to half of all ICU nurses working at general intensive care (ICU), neuro-intensive care (NICU), thoracic intensive care (TICU) and paediatric intensive care (PICU) units in Sweden (n = 1180). An explanatory letter to the nurses was attached to the questionnaire and demographic data were collected. After the first mailing and reminder, 445 participants (38%) responded. A second reminder increased the number of responders by n = 57. In total, a number of 502 Swedish ICU nurses (42⋅5%) answered the 32-item ATODAS instrument.
Data analysis Data was analysed with the SPSS version 18⋅0. We wished to analyse possible differences because of working site, gender, hospital level, academic degree, personal experiences from OD or organ transplantation as well as working experience and age. Differences between two unpaired groups were calculated, first by comparing means followed by Student’s t-test and post hoc test. Differences between several unpaired groups, e.g. hospital level, were analysed by analysis of variance (ANOVA). Dichotomous variables were calculated by 𝜒 2 . Relationships between groups were examined by Pearson’s correlation. In order to identify particular variables of importance for ATODA, we used regression analysis.
Ethical considerations As the study did not involve patients, ethical approval was not required according to the Swedish Act concerning the Ethical Review or Research Involving Humans (SFS, 2003:460). Nevertheless, the ethical aspects are in accordance with the Helsinki Declaration (2011) and the Ethical Guidelines for nursing research in the Nordic countries (2011). The questionnaire was anonymous. Only the administrator at the SAHP knew about the selection and the reminder went out to all informants whether they already had answered or not. Informed consent was deemed following the staff member completing and returning the questionnaire.
RESULTS The final response rate was 42⋅5% (502 of 1180). It was not possible to analyse the external dropout rate of 57, 5% (n = 678). The SAHP handled the random sample, © 2015 British Association of Critical Care Nurses
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distribution and collection of the questionnaire. This procedure made it possible to protect the nurses’ privacy and confidentiality. Demographics of the study participants are presented in Table 1. A total of 97⋅5% (n = 488) of the nurses had a postgraduate education in intensive care nursing. There were 38% (n = 191) with a bachelor degree and 10% (n = 49) with a master degree in nursing. More than half of the participants, 52% (n = 255) had cared for a brain-dead person 1–5 times. Only 8⋅5% (n = 43) lacked this experience and almost as many, 8% had done this more than 10 times. Half of the participants, 51% (n = 255) had participated in discussion about OD with relatives 1–5 times and 8% (n = 41) were very experienced reporting more than 10 discussions with relatives. However, 29⋅5% (n = 148) had never discussed OD with a relative. One basic assumption in this study has been that nurses working in the NICU are more experienced in caring for PODs and therefore might have responded more about organ donor advocacy. As a consequence the 7% (n = 34) NICU nurses were compared with the rest of the group, where relevant. There were 6% (n = 31) with private experience from OD and 10% (n = 51) from organ transplantation. The various advocacy factors are presented in italics instead of using abbreviations in order to improve reading.
ATODA in the whole group The ATODA in the whole group are shown in Table 2. The NICU nurses (n = 34) reported slightly stronger organ donor advocacy compared with the rest of the nurses in all factors except championing organ donation at a political and research level. These differences were not significant, but might indicate a more pronounced will to practice organ donor advocacy among NICU nurses. There were no differences in ATODA between male and female nurses.
Differences because of hospital levels and professional position The participants worked at local, regional and university hospitals. After performing ANOVA analysis there were significant differences because of hospital levels in all advocacy factors except championing OD at a political and research level. However after the post hoc test only a few differences remained stable. Nurses at local hospitals (n = 133) reported a significantly (p = 0⋅05) more positive attitude towards actively and personally safeguarding the will and wishes of the potential organ donor (mean 5⋅4) compared with nurses at regional (n = 169) (mean 5⋅24) or university hospitals (n = 185) that in turn reported a mean of 5⋅23. Furthermore, nurses at local hospitals also reported © 2015 British Association of Critical Care Nurses
Table 1 Demographics of the Swedish intensive care unit (ICU) nurses (n = 502) Mean age (range) Mean work experience in the ICU Gender Female Male Missing responses Current position Unit manager, Assistant unit manager Section leader Unit teacher ICU nurse, with special responsibility for donation ICU staff nurse Other position Missing responses Current work place General intensive care unit (ICU) Neuro-intensive care unit (NICU) Thoracic intensive care unit (TICU) Paediatric intensive care unit (PICU) Other ICU Missing responses Presently employed at Local hospital Regional hospital University hospital Missing responses
47 years, (24–66 years) 16 years (0⋅5–40 years) 88⋅5% (n = 445) 9⋅5% (n = 48) 2% (n = 9) 0⋅5% (n = 2) 3⋅5% (n = 18) 0⋅5% (n = 2) 5⋅5% (n = 27) 68% (n = 342) 20⋅5% (n = 104) 1⋅5% (n = 7) 74% (n = 373) 7% (n = 34) 8% (n = 40) 2% (n = 11) 7⋅5% (n = 37) 1⋅5% (n = 7) 26⋅5% (n = 133) 33⋅5% (n = 169) 37% (n = 185) 3% (n = 15)
Table 2 Attitudes Towards Organ Donor Advocacy among 502 ICU nurses Advocacy action Safeguarding the potential donor’s will and wishes by a professional approach Actively and personally safeguarding the will and wishes of the potential organ donor Safeguarding the will and wishes of the relatives Championing organ donation at a structural hospital level Championing organ donation at a political and research level
Mean value 5⋅79 5⋅28 4⋅58 3⋅88 1⋅55
significantly (p = 0⋅05) stronger interest in safeguarding the will and wishes of the relatives (mean 4⋅7) than nurses at university hospitals (mean 4⋅4). Nurses in positions other than staff nurse were too few to allow meaningful statistical analysis. Only one group of nurses within the ICU was compared with the group of regular staff nurses, it was the ICU nurses with an assignment as Donor Responsible Nurse (DRN). As expected the DRNs (n = 28) significantly reported a more positive attitude towards organ donor advocacy in all factors as shown in Table 3. No differences in the factors of ATODA were found between nurses with an academic degree (bachelor or master) and those without a higher academic degree working as ICU staff nurses or in a different position. 129
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Table 3 Attitudes Towards Organ Donor Advocacy among nurses with an assigned responsibility for organ donation (n = 28), a so-called Donor Responsible Nurse (DRN) compared with all other nurses (n = 467). There were seven missing responses Attitudes Towards Organ Donor Advocacy Championing organ donation at a structural hospital level Championing organ donation at a political and research level Actively and personally safeguarding the will and wishes of the potential organ donor Safeguarding the potential donor’s will and wishes by a professional approach Safeguarding the will and wishes of the relatives
Position
Mean value
DRN All other DRN All other DRN All other
4⋅99 3⋅82 1⋅94 1⋅52 5⋅61 5⋅26
0⋅00
DNR All other
5⋅92 5⋅78
0⋅00
DRN All other
5⋅15 4⋅54
0⋅00
p value
0⋅03 0⋅00
Personal experiences from organ donors or OD Experiences from caring for a POD did not affect the ATODA. Nurses with experiences from conversations with relatives reported significantly (p = 0⋅0001) more positive attitude regarding championing organ donation at a structural hospital level and actively and personally safeguarding the will and wishes of the potential organ donor than those who never participated in such conversations. Nurses with personal experience of OD had a more positive attitude towards organ donor attitude towards championing organ donation at a political and research level than those without this experience, mean: 1⋅85 versus 1⋅53. Also, a private experience from organ transplantation resulted in a significantly (p = 0⋅03) stronger attitude towards championing organ donation at a political and research level than those without, mean: 1⋅80 versus 1⋅30.
Age and professional working experience The participants were divided into groups according to both working experience and age. Nurses that had been working for 30–40 years were significantly (p = 0⋅01) more positive towards championing organ donation at a structural hospital level than those with less experience. Nurses working 16–20 years were significantly (p = 0⋅01) more positive to actively and personally safeguarding the will and wishes of the potential organ donor than those with more or less experience. When comparing age groups it was found that nurses aged 51–60 years were significantly (p = 0⋅001) more positive towards championing organ donation at a structural hospital level as well as towards actively and personally safeguarding the will and wishes of the potential organ donor (p = 0⋅02) than younger nurses. 130
Variables of importance for organ donor advocacy Considering each of the five factors as the dependent variable, we explored variables of importance for ATODA by the use of regression analysis. Starting with the first factor, championing organ advocacy at a structural hospital level, neither type of ICU ward nor the sex of the nurse affected attitudes in factor one. However, the type of hospital explains 1⋅6% of the variation in factor one. The higher the hospital level was, attitudes towards championing organ donation at a structural hospital level reduces by 0⋅172% (p = 0⋅0005). Nurses at university hospitals report the least positive attitude regarding factor one. The number of years worked in the ICU explains the variation in factor one, where the attitude increases positively for each working year by 0⋅018% (p = 0⋅00025). Neither academic degree nor private experience from OD or organ transplantation is of importance in this factor. Personal experience from caring for a brain-dead person explains 1⋅6% of the variation in factor one. For each brain-dead patient the nurse is taking care of, the attitude is positively increased by 0⋅154% (p = 0⋅005). Finally, the number of conversations with relatives to obtain consent explains the variation in this factor, mean: 1⋅85 versus 1⋅53. Also, a private experience linked to organ transplantation resulted in a significantly (p = 0⋅03) stronger attitude towards championing OD at a political and research level than those without this experience, mean: 1⋅80 versus 1⋅30. For each conversation a nurse has with relatives, the attitude towards championing OD at a structural hospital level is positively increased by 0⋅22% (p = 0⋅00013). The second factor, championing organ donation at a political and research level, is affected by private experience from OD that explains 1⋅2% of the variation (p = 0⋅015). Every private experience of OD an ICU nurse has, increases the attitude in this factor by 0⋅32%. Also private experience from organ transplantation explains 1⋅0% of the variation in factor two (p = 0⋅03). For each experience the attitude is positively increased by 0⋅23%. There are four important variables that affect the attitudes of ICU nurses towards actively and personally safeguarding the will and wishes of the potential organ donor. The hospital level explains 1⋅0% of the variation in this factor. The higher the hospital level is, the attitude decreases by 0⋅082% (p = 0⋅028). Thus, nurses working in a university hospital were least willing to actively and personally safeguard the will and wishes of the potential organ donor, whereas nurses working in a local hospital were most willing to do this. The number of working years explains 1⋅9% of the variation in factor two. For each year of work experience, the attitude is positively increased by 0⋅009% (p = 0⋅002). As in factor © 2015 British Association of Critical Care Nurses
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one, caring for a brain-dead person and the number of conversations with relatives also explains the variation in this third factor. Caring for a brain-dead person explains 2⋅0% of the variation, where each brain-dead person increases the attitude with 0⋅103% (p = 0⋅0002). The number of requests for relatives’ consent explains 3⋅1% of the variation and each request increases the attitude by 0⋅136% (p = 0⋅000086). The only important variable in the fourth factor safeguarding the potential donor’s will and wishes by a professional approach, was the type of hospital, explaining 0⋅8% of the variations. The higher the hospital level, the attitude decreases by 0⋅044% (p = 0⋅053). Finally, attitudes towards safeguarding the will and wishes of the relatives are affected by the hospital level and the nurses’ number of working years. The hospital level explains 2⋅3% of the variation in this factor where the attitude is decreased by 0⋅155%, the higher the hospital level reached (p = 0⋅0001). Number of working years explains 0⋅9% of the variation in factor five. For each working year, the attitude increases positively by 0⋅008% (p = 0⋅042). The findings in this study might be summarized as follows: • The most favoured advocacy action among Swedish ICU nurses was safeguarding the potential donor’s will and wishes by a professional approach, closely followed by actively and personally safeguarding the POD’s will and wishes. • NICU nurses appeared to be slightly more engaged in organ donor advocacy than general ICU nurses. • Nurses at local hospitals reported a more positive attitude towards organ donor advocacy overall compared with nurses at larger regional or university hospitals. • Nurses at the university hospital level were least interested in safeguarding the potential donor’s will and wishes using a professional approach. • Nurses with previous experience of obtaining consent from the relatives regarding OD reported more positive ATODA. • Private experiences from OD and organ transplantation increased attitudes towards championing organ donation at a political and research level. • Nurses with a long working experience as well as being over 50 years of age reported more positive ATODA. • Important factors for positive ATODA were hospital level, working experience, participating in conversation with relatives, caring for brain-dead persons and private experiences from OD or organ transplantation. © 2015 British Association of Critical Care Nurses
Methodological considerations and limitations The target for this survey was to obtain approximately 500 completed questionnaires in order to perform a thorough evaluation and refinement of the ATODAS as previously published by Flodén et al. (2011a) as well as to obtain valid data to further understand factors of concern for organ donor advocacy. The SAHP membership was oversampled because a low response rate (20–30%) was anticipated. Even if better than expected, the response rate slightly above 40% demands considerations. A total of 74 nurses contacted us to decline participation, as they no longer worked in the ICU, which indicates that the SAHP membership registry was not sufficiently updated. This is to be deplored because it is the only fairly reliable registry available in Sweden. A systematic dropout is also suspected because organ donor advocacy is a highly demanding aspect of nursing and may be considered by professionals to be sensitive and difficult to approach. Almost every item in the ATODAS demands a more or less deep reflection in respect of one’s professional and moral responsibility. Participants might include individuals holding strong opinions about organ donor advocacy who are willing to express these views. Another methodological aspect relevant to this survey is whether the nationality/ethnic origins of the participants and the health care organizations are too specific to enable generalizations of the results. Most countries have their own legislation and regulations regarding OD and consequently, research into attitudes and beliefs about OD must be carried out within each national framework. Required interventions need to be adjusted to meet an individual country’s specific circumstances. We believe that data from this study makes it possible to generalize about countries within Europe, as well as those countries with a highly developed ICU organization for organ preservation and OD. Although this survey did not ask for ethnicity of the participants because it is not a research tradition in Sweden, we believe that the essence of advocacy and in a sense the essence of nursing is, to some extent universal, regardless of nationality or ethnicity. A review of the value of nursing (Horton et al., 2007) suggests that respect and caring are the essence of the nursing profession and within caring there is a philosophy of moral commitment towards protecting human dignity and preserving humanity, all important parts of organ donor advocacy. We cannot neglect that there is an established link between value and cultures because a range of factors influences values. Owing to an increasingly global and multicultural Swedish society, the cultural values of individuals already residing within our country may vary substantially. This may also be reflected within 131
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work groups such as ICU nurses and their health care organization. So despite the monocultural selection of the participants, it may be possible to generalize these findings in this Swedish study to other countries with similar conditions.
CONCLUSIONS Discussion on the findings The most surprising finding was that nurses working at university hospitals, where the national transplant units are located, were least positive towards organ donor advocacy. One explanation might be that these large hospitals have a high staff turnover and employ fairly young nurses with little professional experience. As caring for a POD is demanding work, the lack of professional experience might affect the desire to promote OD. By contrast, local hospitals manage to keep the experienced staff, which might explain the fact that older nurses and those working in local hospitals reported most positive ATODA. This anomaly between types of hospitals, in respect of potential and actual organ donors, will require further study. Closer co-operation between the ICU and the transplant unit, where ICU nurses can see the results of their efforts, might inspire more positive attitudes towards advocacy. The most preferred single action by nurses to promote OD was safeguarding the will and wishes of the POD both actively and by showing positive support for laws and regulations regarding OD that protect the dignity of the deceased. This active approach means that the nurse will take action if the medical treatment does not optimize the organs and will question inadequate care of the POD, to the extent that he/she will argue against all forms of unethical treatment. The nurse will call attention to any team member who hinders the correct and consistent care of the POD. This more authoritarian and professional approach involves expressing the wishes of the POD, if known and bringing the wishes of the deceased and/or the relatives of the deceased in respect of OD, to the attention of the intensive care specialist in the belief that it is the nurse’s responsibility to represent the POD throughout the donation process. The duty of the nurse is to respect the wishes of the POD under all circumstances
and for the nurse to make sure that those colleagues on his/her shifts are aware of the wishes of the deceased or the next of kin. These actions by the nurse promoting OD can be the essential prerequisites leading to OD and should be supported by the ICU organization. Today, there is a critical mismatch between available organs for transplant and acutely or critically ill patients with end-stage organ disease. Patients who may benefit from organ transplantation far outnumber available organs. One crucial cause is non-recognition or delay in determining BD (Flodén et al., 2011b). This non-recognition or delay in BD determination may be addressed through clinician training and frequent clinical assessment to detect early stages of brain-stem herniation refractory to aggressive measures for control of intracranial pressure. Organ donor advocacy activity is another useful approach. Factors leading to positive ATODA were experiences of caring for brain-dead persons and having discussions about OD with relatives. ICU nurses with these experiences should be encouraged to share their knowledge so as to increase professional involvement and develop excellent nursing (Vaartio et al., 2006). Ethical dilemmas surround death in general and BD in particular. Effective functioning in the ICU also involves understanding the behaviour that surrounds mortality, e.g. organ donor advocacy. Central to health care is to respect the patient’s dignity. Achieving a dignified and tolerable death is of great significance. End-of-life issues in the ICU do not require a technological solution, but a social and philosophical one (Gavrin, 2007).
ACKNOWLEDGEMENTS This study was performed within the Swedish nursing research network in OD and organ transplantation. We acknowledge funding from Swedish Research Council for Health, Working Life and Welfare, Stiftelsen för Njursjuka, a foundation for research in end-stage renal failure, the Lennart Jacobssons foundation for research into kidney transplantation and Professor Lars-Erik Gelin memorial foundation. The authors are grateful to Tommy Johansson for statistical advice and Joseph Clark for language review. None of those acknowledged here had any other involvement in the study.
WHAT IS KNOWN ABOUT THIS TOPIC • •
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Caring for a POD is a highly demanding task, emphasizing the importance of preserving the deceased persons dignity by adopting advocacy behaviour. Further, organ donor advocacy has been found to be of crucial importance for the care of a POD and his/her relatives in the ICU.
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Attitudes towards organ donor advocacy
WHAT DOES THIS PAPER ADDS • • • •
This study is the first effort ever to comprehensively grasp the organ donor advocacy behaviour among ICU nurses. This study shows that effective functioning in the ICU also involves understanding the behaviour that surrounds mortality, e.g. organ donor advocacy. Central to end-of-life care is to respect the patient’s dignity. This study suggests that end-of-life issues in the ICU do not require a technological solution, but a social and philosophical one. Our understanding of the care of a POD is increased. Finally, it emphasized the importance of organizing the care of PODs and their relatives in a way that promotes professional involvement and advocacy.
REFERENCES Alghanim SA. (2010). Knowledge and attitudes toward organ donation: a community-based study comparing rural and urban populations. Saudi Journal of Kidney Diseases and Transplantation; 21: 23–30 http://www-sjkdt.org/ (accessed 24/02/14.. Cohen J, Ami SB, Ashkenazi T, Singer P. (2008). Attitude of health care professionals to brain death: influence on the organ donation process. Clinical Transplantation; 22: 211–215. Flodén A, Forsberg A. (2009). A phenomenographic study of ICU-nurses perception of and attitudes to organ donation and care of potential donors. Intensive & Critical Care Nursing; 25: 306–313. Flodén A, Kelvered M, Frid I, Bäckman L. (2006). Causes why organ donation was not carried out despite the deceased being positive to donation. Transplantation Proceedings; 38: 2219–2221. Flodén A, Lennerling A, Fridh I, Rizell M, Forsberg A. (2011a). Development and psychometric evaluation of the instrument: Attitudes Towards Organ Donor Advocacy Scale (ATODAS). The Open Nursing Journal; 5: 65–73. Flodén A, Persson LO, Rizell M, Sanner M, Forsberg A. (2011b). Attitudes to organ donation among Swedish ICU-nurses. Journal of Clinical Nursing; 20: 3183–3185. Flodén A, Berg M, Forsberg A. (2011c). ICU-nurse’s perceptions of responsibilities and organisation in relation to organ donation – a phenomenographic study. Intensive & Critical Care Nursing; 27: 305–316. Gavrin JR. (2007). Ethical considerations at the end of life in the intensive care unit. Critical Care Medicine; 35(2 Suppl): 85–94. Horton K, Tschudin V, Forget A. (2007). The value of nursing: a literature review. Nursing Ethics; 14: 716–740. Jacoby L, Jaccard J. (2010). Perceived support among families deciding about organ donation for their loved ones: donor vs. nondonor next of kin. American Journal of Critical Care; 19: e52–e61. Kim JR, Fisher MJ, Elliot D. (2006a). Attitudes of intensive care nurses towards brain death and organ transplantation: Instrument development and testing. Journal of Advanced Nursing; 53: 571–582. Kim JR, Fisher MJ, Elliot D. (2006b). Knowledge levels of Korean intensive care nurses towards brain death and organ transplantation. Journal of Clinical Nursing; 15: 574–580. Lima CX, Lima MV, Cerqueira RG, Cerqueira TG, Ramos TS, Nascimento M, Andrade CR, Cunha DG, Garcia S. (2010). Organ donation: cross-sectional survey of knowledge and personal views of Brazilian medical students and physicians. Transplantation Proceedings; 42: 1466–1471. Lin LM, Lin CC, Lam HD, Chen CL. (2010). Increasing the participation of intensive care unit nurses to promote deceased donor organ donation. Transplantation Proceedings; 42: 716–718.
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Roels L, Spaight C, Smits J, Cohen B. (2010). Critical care staffs’ attitudes confidence levels and educational needs correlate with countries’ donation rates: data from the donor action database. Transplant International; 23: 842–850. Sanner M. (2007). Two perspectives on organ donation: experiences of potential donor families and intensive care physicians of the same event. Journal of Critical Care; 22: 296–304. SFS. 1987:269 (updated 2005:132). Lag om kriterier för bestämmande av människans död. [Act concerning criteria for determination of human death]. Stockholm: Riksdagen. http:// www.notisum.se/rnp/sls/lag/19870269.htm (accessed 24/02/14). SFS. 1995:831. Lag om transplantation m.m. [The Swedish Transplantation Act]. Stockholm: Riksdagen. http://www.notisum.se/Pub/Doc.aspx?url=/rnp/sls/lag/ 19950831.htm (accessed 24/02/14). SFS 2003:460 Lag om etikprövning av forskning som avser människor. [The act concerning the ethical review of research involving humans]. Stockholm: Riksdagen. http://www. riksdagen.se/sv/Dokument-Lagar/Lagar/Svenskforfattnings samling/Lag-2003460-om-etikprovning_sfs-2003-460/ (accessed 14/08/14). Sharp TA. (2009). The impact of trust study days on organ and tissue donation among critical care staff. Journal of Intensive Care Society; 10: 189–196. SOSFS 2009:30 (M). Socialstyrelsens föreskrifter om donation och tillvaratagande av organ, vävnader och celler. [The National board of Health and Welfare rules concerning donation and procurement of organs, tissues and cells]. Stockholm: The National board of Health and Welfare [Socialstyrelsen]. http://www.socialstyrelsen.se/sosfs/2009-30 (accessed 24/02/14). SOSFS 2012:15 (M). Socialstyrelsens föreskrifter: Ändring i föreskrifterna. SOSFS 2009:30 om donation och tillvaratagande av organ, vävnader och celler. [The National board of Health and Welfare rules: Up-date of rule SOSFS 2009:30 rules concerning donation and procurement of organs, tissues and cells]. Stockholm: The National board of Health and Welfare [Socialstyrelsen] http://www.socialstyrelsen. se/publikationer2012/2012-7-12 (accessed 24/02/14). The National Board of Health and Welfare. (2012). Möjliga organdonatorer i Sverige 2012 – en sammanställning av dödsfall inom intensivvården. http://www.socialstyrelsen. se/publikationer2013/2013-7-3 (accessed 24/02/14). Vaartio H, Leino-Kilpi H, Salanterä S, Suominen T. (2006). Nursing advocacy: how is it defined by patients and nurses, what does it involve and how is it experienced? Scandinavian Journal of Caring Sciences; 20: 282–292.
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Attitudes towards organ donor advocacy among Swedish intensive care nurses Anna Forsberg, Annette Lennerling, Isabell Fridh, Magnus Rizell, Charlotte Lovén and Anne Flodén ABSTRACT Objectives: To explore the attitudes of Swedish intensive care nurses towards organ donor advocacy. Background: The concept of organ donor advocacy is critical to nurses who care for potential donors in order to facilitate organ donation (OD). Design: A retrospective cross-sectional study was employed. Methods: Inclusion criteria in this survey were to be a registered nurse and to work in a Swedish intensive care unit (ICU). Participants were identified by the Swedish association of health professionals. A number of 502 Swedish ICU nurses answered the 32-item questionnaire Attitudes Towards Organ Donor Advocacy Scale (ATODAS), covering the five dimensions of organ donor advocacy: attitudes towards championing organ donation at a structural hospital level, or at a political and research level, attitudes towards actively and personally safeguarding the will and wishes of the potential organ donor, or by using a more professional approach and finally to safeguard the will and wishes of the relatives. Data were analysed with the SPSS version 18⋅0 and the results were assessed by using Student’s t-test and post hoc test, analysis of variance (ANOVA), 𝜒 2 , Pearson’s correlation and regression analysis. Results: The most favoured advocacy action was safeguarding the POD’s will and wishes by a professional approach, closely followed by actively and personally safeguarding the POD’s will and wishes. Nurses at local hospitals reported a more positive attitude towards organ donor advocacy overall compared with nurses at larger regional or university hospitals. Important factors leading to positive attitudes were seniority, working experience, participating in conversations with relatives, caring for brain-dead persons and private experiences from OD or organ transplantation. Conclusions: Intensive and critical care nurses with short working experience in university hospitals showed the least positive attitude towards organ donor advocacy. This is problematic because many ODs and all transplantations are performed in university hospitals. Relevance to clinical practice: This study emphasizes the importance of organizing the care of PODs and their relatives in a way that promotes advocacy. Key words: Advocacy • Brain death • Intensive and critical care nurses • Nursing developments • Organ donation
BACKGROUND Authors: A Forsberg, R.N., Professor, Department of Health Sciences, Lund University and Department of Transplantation and Cardiology, Skåne University Hospital, Lund, Sweden; A Lennerling, R.N., PhD, Associate Professor, The Transplant Institute, Sahlgrenska University Hospital and Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; I Fridh, R.N., PhD, Senior Lecturer, School of Health Sciences, University of Borås, Borås, Sweden; M Rizell, MD, PhD, Transplant Surgeon, The Transplant Institute, Sahlgrenska University Hospital and Department of Surgery, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; C Lovén, R.N. Transplant coordinator, The Unit for Organ and Tissue Donation, Sahgrenska University Hospital, Gothenburg, Sweden; A Flodén, R.N., PhD, Senior Lecturer, School of Health Sciences, Jönköping University, Jönköping, Sweden Address for correspondence: Dr A Flodén, Senior Lecturer, School of Health Sciences, Jönköping University, Box 1026, SE-551 11 Jönköping, Sweden E-mail: anne.fl[email protected]
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The concept of organ donor advocacy is critical to nurses who are faced with the challenge of caring for potential donors in order to facilitate organ donation (OD). A literature review in this area refers to publications before or after 2005. The first phase, 1988–2005 represents the first 17 years of brain death (BD) legislation in Sweden. Even if still relevant because of legislation, many of these studies are a bit dated and therefore we simply summarize the research during this period focused on four areas: the donor, the relatives, the health care professionals and ethical considerations. Studies after 2005 have focused on attitudes towards OD among health care professionals. Specific behaviour among intensive care unit (ICU) © 2015 British Association of Critical Care Nurses • Vol 20 No 3
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staff is significantly associated with consent to OD or decline of OD (Flodén et al., 2006; Sanner, 2007; Cohen et al., 2008; Sharp, 2009; Jacoby and Jaccard, 2010). Several studies are available that measure knowledge and attitudes towards OD among ICU staff (Kim et al., 2006a, 2006b; Alghanim, 2010; Lima et al., 2010; Lin et al., 2010; Roels et al., 2010). Many of these were carried out in non-European contexts and the results can therefore be difficult to transfer to a western context. However, a common feature is their focus on educational issues. There is also a strong focus on attitudes towards the actual phenomenon of OD rather than attitudes towards actions in relation to OD. An example of this is organ donor advocacy behaviour. In three studies aimed at in-depth exploration of ICU nurses’ perceptions of experiences in the area of OD from the perspective of caring for potential organ donors (PODs), Flodén et al. answered the research question: how do experienced ICU nurses perceive OD as a phenomenon and the situation based on experiences of caring for PODs (Flodén and Forsberg, 2009; Flodén et al., 2011c; Flodén et al., 2011b). Their findings revealed that caring for a POD is a highly demanding task, emphasizing the importance of preserving the deceased person’s dignity by adopting advocacy behaviour. Further, organ donor advocacy was found to be of crucial importance for the care of a POD and his/her relatives in the ICU. They also developed and tested a questionnaire designed to explore attitudes towards organ donor advocacy (ATODA) among ICU nurses (Flodén et al., 2011a). As there is a need to expand the current opinion of the organ donor advocacy experience, and deepen our understanding of attitudes towards the care of a potential donor, e.g. organ donor advocacy within the ICU a survey was required.
AIMS OF THE STUDY The aim of this study was to explore the attitudes of Swedish ICU nurses towards organ donor advocacy. The context of OD in Sweden is presented in Box 1.
BOX 1 THE SWEDISH CONTEXT OF ORGAN DONATION Approximately 90 000 persons die every year in Sweden. During 2012, 248 persons were diagnosed as brain dead and among these, 212 persons were identified as PODs with 141 donations being performed from brain-dead donors (The National Board of Health and Welfare, 2012). In Sweden, brain death (BD) legislation is understood as whole BD. The first legislation that defined death was introduced in Sweden in 1988 (SFS, 1987:269). Clinical neurological examination is the gold standard in Sweden for performing BD diagnostics.
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When a patient is declared brain dead the ICU physician approaches the relatives and asks if the will of the deceased regarding OD is known. Sweden has an opt-out and presumed consent legislation. According to the Swedish Transplantation Act, the standpoint of the deceased to OD is paramount. The last expressed wish is valid. Consent is presumed in cases where the wish of the deceased is unknown. Next of kin have the right of veto only in cases where the wishes of the deceased are not known (SFS, 1995:831; SOSFS, 2009:30 (M); SOSFS, 2012:15).
Flodén et al. (2011a) have defined organ donor advocacy as well as the construct of ATODA, that we rely on in this study, as described in Box 2.
BOX 2 DEFINITIONS OF POTENTIAL ORGAN DONOR AND ORGAN DONOR ADVOCACY The concept of potential organ donor is used to denote a patient who is declared dead, where death is confirmed by criteria for BD, treated by means of a ventilator in an ICU and is considered medically suitable to become an organ donor, but where a decision about OD has not yet been made (The Swedish Council for organ and tissue donation, 2010). In this article, the terms next of kin/relative/family/family members are used synonymously. The term nursing will refer to the discipline, unless otherwise stated. Organ donor advocacy is stated as: ‘It is the ICU nurse’s own decision whether he or she is in favour of or against participating in OD and caring for the potential or actual donor, as well as preserving, representing and safeguarding the donor’s and his/her relatives’ rights, best interests and values after death’ (Flodén et al., 2011a, p. 66).
Organ donor advocacy includes three principle dimensions: safeguarding the potential donor’s will and wishes, safeguarding the will and wishes of the potential donor’s relatives and championing social justice. Different characteristics of advocacy with patients are already well-documented but not in relation to OD and the care of the POD in the ICU environment.
METHODS Study design A retrospective cross-sectional study was employed.
Sampling and recruitment Inclusion criteria for participating in this study were to be a registered nurse and to work in a Swedish ICU. Participants were identified from an existing register administered by the Swedish Association of Health Professionals (SAHP). The SAHP is a politically independent trade union and professional organization for 127
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nurses ensuring that no potential conflict of interest were present. Nurses not registered with the SAHP were not available for inclusion. A random sample of 50% of the ICU nurses from the SAHP member register was included by an administrator picking every second person in the register listed by names from the first to the last letter in the alphabet. The sample was representative of all ICU nurses in Sweden as the informants were recruited from all available ICU sites.
Data collection methods In this study we used the instrument Attitudes Towards Organ Donor Advocacy Scale (ATODAS). This instrument is reported in detail elsewhere (Flodén et al., 2011a). The ATODAS includes 32 items and was used in its original form. It was not piloted for this particular survey as it is well tested in a similar population, context and culture as presented by Flodén et al., 2011a. The content validity index (CVI) for the entire ATODAS was 82%. Inter-item correlations ranged from 0⋅78 to 0⋅42 and the Cronbach’s alpha coefficients showed internal consistency ranging from 0⋅62 to 0⋅90. All factors have eigenvalues greater than 1⋅0. The total scale variance explained by the five factors was 41⋅9% (Flodén et al., 2011a). Responses were scored on a 6-point scale ranging from strongly disagree (1) to strongly agree (6). Scoring was reversed for one negatively worded item so that a high score reflected strong support for advocacy. Championing social justice involves advocating at a macro social level, which on the one hand, may involve a structural level at the hospital where one works and on the other hand, a political or research level. Thus, it is possible to advocate on two different macro social levels in relation to OD. At a micro social level, it is also possible to advocate in relation to the donor’s wishes both in a clearly action-oriented way and by adopting a professional but less active approach. Finally, the structure was also covered at the micro social level by a seven-item factor measuring advocacy in relation to the donor’s relatives. In conclusion, ATODAS is explained by the following five factors described in box 3.
BOX 3 THE FIVE DIMENSIONS OF THE ATTITUDES TOWARDS ORGAN DONOR ADVOCACY-SCALE 1. 2. 3.
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Attitudes towards championing OD at a structural hospital level (ATODA-SHL) (10 items). Attitudes towards championing OD at a political and research level (ATODA-PRL) (4 items). Attitudes towards actively and personally safeguarding the will and wishes of the POD (ATODA-APS) (5 items).
4.
5.
Attitudes towards safeguarding the potential donor’s will and wishes by a professional approach (ATODA-SPPA) (6 items). Attitudes towards safeguarding the will and wishes of the relatives (ATODA-SWR) (7 items).
The ATODA questionnaire was by the SAHP anonymized and sent to half of all ICU nurses working at general intensive care (ICU), neuro-intensive care (NICU), thoracic intensive care (TICU) and paediatric intensive care (PICU) units in Sweden (n = 1180). An explanatory letter to the nurses was attached to the questionnaire and demographic data were collected. After the first mailing and reminder, 445 participants (38%) responded. A second reminder increased the number of responders by n = 57. In total, a number of 502 Swedish ICU nurses (42⋅5%) answered the 32-item ATODAS instrument.
Data analysis Data was analysed with the SPSS version 18⋅0. We wished to analyse possible differences because of working site, gender, hospital level, academic degree, personal experiences from OD or organ transplantation as well as working experience and age. Differences between two unpaired groups were calculated, first by comparing means followed by Student’s t-test and post hoc test. Differences between several unpaired groups, e.g. hospital level, were analysed by analysis of variance (ANOVA). Dichotomous variables were calculated by 𝜒 2 . Relationships between groups were examined by Pearson’s correlation. In order to identify particular variables of importance for ATODA, we used regression analysis.
Ethical considerations As the study did not involve patients, ethical approval was not required according to the Swedish Act concerning the Ethical Review or Research Involving Humans (SFS, 2003:460). Nevertheless, the ethical aspects are in accordance with the Helsinki Declaration (2011) and the Ethical Guidelines for nursing research in the Nordic countries (2011). The questionnaire was anonymous. Only the administrator at the SAHP knew about the selection and the reminder went out to all informants whether they already had answered or not. Informed consent was deemed following the staff member completing and returning the questionnaire.
RESULTS The final response rate was 42⋅5% (502 of 1180). It was not possible to analyse the external dropout rate of 57, 5% (n = 678). The SAHP handled the random sample, © 2015 British Association of Critical Care Nurses
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distribution and collection of the questionnaire. This procedure made it possible to protect the nurses’ privacy and confidentiality. Demographics of the study participants are presented in Table 1. A total of 97⋅5% (n = 488) of the nurses had a postgraduate education in intensive care nursing. There were 38% (n = 191) with a bachelor degree and 10% (n = 49) with a master degree in nursing. More than half of the participants, 52% (n = 255) had cared for a brain-dead person 1–5 times. Only 8⋅5% (n = 43) lacked this experience and almost as many, 8% had done this more than 10 times. Half of the participants, 51% (n = 255) had participated in discussion about OD with relatives 1–5 times and 8% (n = 41) were very experienced reporting more than 10 discussions with relatives. However, 29⋅5% (n = 148) had never discussed OD with a relative. One basic assumption in this study has been that nurses working in the NICU are more experienced in caring for PODs and therefore might have responded more about organ donor advocacy. As a consequence the 7% (n = 34) NICU nurses were compared with the rest of the group, where relevant. There were 6% (n = 31) with private experience from OD and 10% (n = 51) from organ transplantation. The various advocacy factors are presented in italics instead of using abbreviations in order to improve reading.
ATODA in the whole group The ATODA in the whole group are shown in Table 2. The NICU nurses (n = 34) reported slightly stronger organ donor advocacy compared with the rest of the nurses in all factors except championing organ donation at a political and research level. These differences were not significant, but might indicate a more pronounced will to practice organ donor advocacy among NICU nurses. There were no differences in ATODA between male and female nurses.
Differences because of hospital levels and professional position The participants worked at local, regional and university hospitals. After performing ANOVA analysis there were significant differences because of hospital levels in all advocacy factors except championing OD at a political and research level. However after the post hoc test only a few differences remained stable. Nurses at local hospitals (n = 133) reported a significantly (p = 0⋅05) more positive attitude towards actively and personally safeguarding the will and wishes of the potential organ donor (mean 5⋅4) compared with nurses at regional (n = 169) (mean 5⋅24) or university hospitals (n = 185) that in turn reported a mean of 5⋅23. Furthermore, nurses at local hospitals also reported © 2015 British Association of Critical Care Nurses
Table 1 Demographics of the Swedish intensive care unit (ICU) nurses (n = 502) Mean age (range) Mean work experience in the ICU Gender Female Male Missing responses Current position Unit manager, Assistant unit manager Section leader Unit teacher ICU nurse, with special responsibility for donation ICU staff nurse Other position Missing responses Current work place General intensive care unit (ICU) Neuro-intensive care unit (NICU) Thoracic intensive care unit (TICU) Paediatric intensive care unit (PICU) Other ICU Missing responses Presently employed at Local hospital Regional hospital University hospital Missing responses
47 years, (24–66 years) 16 years (0⋅5–40 years) 88⋅5% (n = 445) 9⋅5% (n = 48) 2% (n = 9) 0⋅5% (n = 2) 3⋅5% (n = 18) 0⋅5% (n = 2) 5⋅5% (n = 27) 68% (n = 342) 20⋅5% (n = 104) 1⋅5% (n = 7) 74% (n = 373) 7% (n = 34) 8% (n = 40) 2% (n = 11) 7⋅5% (n = 37) 1⋅5% (n = 7) 26⋅5% (n = 133) 33⋅5% (n = 169) 37% (n = 185) 3% (n = 15)
Table 2 Attitudes Towards Organ Donor Advocacy among 502 ICU nurses Advocacy action Safeguarding the potential donor’s will and wishes by a professional approach Actively and personally safeguarding the will and wishes of the potential organ donor Safeguarding the will and wishes of the relatives Championing organ donation at a structural hospital level Championing organ donation at a political and research level
Mean value 5⋅79 5⋅28 4⋅58 3⋅88 1⋅55
significantly (p = 0⋅05) stronger interest in safeguarding the will and wishes of the relatives (mean 4⋅7) than nurses at university hospitals (mean 4⋅4). Nurses in positions other than staff nurse were too few to allow meaningful statistical analysis. Only one group of nurses within the ICU was compared with the group of regular staff nurses, it was the ICU nurses with an assignment as Donor Responsible Nurse (DRN). As expected the DRNs (n = 28) significantly reported a more positive attitude towards organ donor advocacy in all factors as shown in Table 3. No differences in the factors of ATODA were found between nurses with an academic degree (bachelor or master) and those without a higher academic degree working as ICU staff nurses or in a different position. 129
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Table 3 Attitudes Towards Organ Donor Advocacy among nurses with an assigned responsibility for organ donation (n = 28), a so-called Donor Responsible Nurse (DRN) compared with all other nurses (n = 467). There were seven missing responses Attitudes Towards Organ Donor Advocacy Championing organ donation at a structural hospital level Championing organ donation at a political and research level Actively and personally safeguarding the will and wishes of the potential organ donor Safeguarding the potential donor’s will and wishes by a professional approach Safeguarding the will and wishes of the relatives
Position
Mean value
DRN All other DRN All other DRN All other
4⋅99 3⋅82 1⋅94 1⋅52 5⋅61 5⋅26
0⋅00
DNR All other
5⋅92 5⋅78
0⋅00
DRN All other
5⋅15 4⋅54
0⋅00
p value
0⋅03 0⋅00
Personal experiences from organ donors or OD Experiences from caring for a POD did not affect the ATODA. Nurses with experiences from conversations with relatives reported significantly (p = 0⋅0001) more positive attitude regarding championing organ donation at a structural hospital level and actively and personally safeguarding the will and wishes of the potential organ donor than those who never participated in such conversations. Nurses with personal experience of OD had a more positive attitude towards organ donor attitude towards championing organ donation at a political and research level than those without this experience, mean: 1⋅85 versus 1⋅53. Also, a private experience from organ transplantation resulted in a significantly (p = 0⋅03) stronger attitude towards championing organ donation at a political and research level than those without, mean: 1⋅80 versus 1⋅30.
Age and professional working experience The participants were divided into groups according to both working experience and age. Nurses that had been working for 30–40 years were significantly (p = 0⋅01) more positive towards championing organ donation at a structural hospital level than those with less experience. Nurses working 16–20 years were significantly (p = 0⋅01) more positive to actively and personally safeguarding the will and wishes of the potential organ donor than those with more or less experience. When comparing age groups it was found that nurses aged 51–60 years were significantly (p = 0⋅001) more positive towards championing organ donation at a structural hospital level as well as towards actively and personally safeguarding the will and wishes of the potential organ donor (p = 0⋅02) than younger nurses. 130
Variables of importance for organ donor advocacy Considering each of the five factors as the dependent variable, we explored variables of importance for ATODA by the use of regression analysis. Starting with the first factor, championing organ advocacy at a structural hospital level, neither type of ICU ward nor the sex of the nurse affected attitudes in factor one. However, the type of hospital explains 1⋅6% of the variation in factor one. The higher the hospital level was, attitudes towards championing organ donation at a structural hospital level reduces by 0⋅172% (p = 0⋅0005). Nurses at university hospitals report the least positive attitude regarding factor one. The number of years worked in the ICU explains the variation in factor one, where the attitude increases positively for each working year by 0⋅018% (p = 0⋅00025). Neither academic degree nor private experience from OD or organ transplantation is of importance in this factor. Personal experience from caring for a brain-dead person explains 1⋅6% of the variation in factor one. For each brain-dead patient the nurse is taking care of, the attitude is positively increased by 0⋅154% (p = 0⋅005). Finally, the number of conversations with relatives to obtain consent explains the variation in this factor, mean: 1⋅85 versus 1⋅53. Also, a private experience linked to organ transplantation resulted in a significantly (p = 0⋅03) stronger attitude towards championing OD at a political and research level than those without this experience, mean: 1⋅80 versus 1⋅30. For each conversation a nurse has with relatives, the attitude towards championing OD at a structural hospital level is positively increased by 0⋅22% (p = 0⋅00013). The second factor, championing organ donation at a political and research level, is affected by private experience from OD that explains 1⋅2% of the variation (p = 0⋅015). Every private experience of OD an ICU nurse has, increases the attitude in this factor by 0⋅32%. Also private experience from organ transplantation explains 1⋅0% of the variation in factor two (p = 0⋅03). For each experience the attitude is positively increased by 0⋅23%. There are four important variables that affect the attitudes of ICU nurses towards actively and personally safeguarding the will and wishes of the potential organ donor. The hospital level explains 1⋅0% of the variation in this factor. The higher the hospital level is, the attitude decreases by 0⋅082% (p = 0⋅028). Thus, nurses working in a university hospital were least willing to actively and personally safeguard the will and wishes of the potential organ donor, whereas nurses working in a local hospital were most willing to do this. The number of working years explains 1⋅9% of the variation in factor two. For each year of work experience, the attitude is positively increased by 0⋅009% (p = 0⋅002). As in factor © 2015 British Association of Critical Care Nurses
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one, caring for a brain-dead person and the number of conversations with relatives also explains the variation in this third factor. Caring for a brain-dead person explains 2⋅0% of the variation, where each brain-dead person increases the attitude with 0⋅103% (p = 0⋅0002). The number of requests for relatives’ consent explains 3⋅1% of the variation and each request increases the attitude by 0⋅136% (p = 0⋅000086). The only important variable in the fourth factor safeguarding the potential donor’s will and wishes by a professional approach, was the type of hospital, explaining 0⋅8% of the variations. The higher the hospital level, the attitude decreases by 0⋅044% (p = 0⋅053). Finally, attitudes towards safeguarding the will and wishes of the relatives are affected by the hospital level and the nurses’ number of working years. The hospital level explains 2⋅3% of the variation in this factor where the attitude is decreased by 0⋅155%, the higher the hospital level reached (p = 0⋅0001). Number of working years explains 0⋅9% of the variation in factor five. For each working year, the attitude increases positively by 0⋅008% (p = 0⋅042). The findings in this study might be summarized as follows: • The most favoured advocacy action among Swedish ICU nurses was safeguarding the potential donor’s will and wishes by a professional approach, closely followed by actively and personally safeguarding the POD’s will and wishes. • NICU nurses appeared to be slightly more engaged in organ donor advocacy than general ICU nurses. • Nurses at local hospitals reported a more positive attitude towards organ donor advocacy overall compared with nurses at larger regional or university hospitals. • Nurses at the university hospital level were least interested in safeguarding the potential donor’s will and wishes using a professional approach. • Nurses with previous experience of obtaining consent from the relatives regarding OD reported more positive ATODA. • Private experiences from OD and organ transplantation increased attitudes towards championing organ donation at a political and research level. • Nurses with a long working experience as well as being over 50 years of age reported more positive ATODA. • Important factors for positive ATODA were hospital level, working experience, participating in conversation with relatives, caring for brain-dead persons and private experiences from OD or organ transplantation. © 2015 British Association of Critical Care Nurses
Methodological considerations and limitations The target for this survey was to obtain approximately 500 completed questionnaires in order to perform a thorough evaluation and refinement of the ATODAS as previously published by Flodén et al. (2011a) as well as to obtain valid data to further understand factors of concern for organ donor advocacy. The SAHP membership was oversampled because a low response rate (20–30%) was anticipated. Even if better than expected, the response rate slightly above 40% demands considerations. A total of 74 nurses contacted us to decline participation, as they no longer worked in the ICU, which indicates that the SAHP membership registry was not sufficiently updated. This is to be deplored because it is the only fairly reliable registry available in Sweden. A systematic dropout is also suspected because organ donor advocacy is a highly demanding aspect of nursing and may be considered by professionals to be sensitive and difficult to approach. Almost every item in the ATODAS demands a more or less deep reflection in respect of one’s professional and moral responsibility. Participants might include individuals holding strong opinions about organ donor advocacy who are willing to express these views. Another methodological aspect relevant to this survey is whether the nationality/ethnic origins of the participants and the health care organizations are too specific to enable generalizations of the results. Most countries have their own legislation and regulations regarding OD and consequently, research into attitudes and beliefs about OD must be carried out within each national framework. Required interventions need to be adjusted to meet an individual country’s specific circumstances. We believe that data from this study makes it possible to generalize about countries within Europe, as well as those countries with a highly developed ICU organization for organ preservation and OD. Although this survey did not ask for ethnicity of the participants because it is not a research tradition in Sweden, we believe that the essence of advocacy and in a sense the essence of nursing is, to some extent universal, regardless of nationality or ethnicity. A review of the value of nursing (Horton et al., 2007) suggests that respect and caring are the essence of the nursing profession and within caring there is a philosophy of moral commitment towards protecting human dignity and preserving humanity, all important parts of organ donor advocacy. We cannot neglect that there is an established link between value and cultures because a range of factors influences values. Owing to an increasingly global and multicultural Swedish society, the cultural values of individuals already residing within our country may vary substantially. This may also be reflected within 131
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work groups such as ICU nurses and their health care organization. So despite the monocultural selection of the participants, it may be possible to generalize these findings in this Swedish study to other countries with similar conditions.
CONCLUSIONS Discussion on the findings The most surprising finding was that nurses working at university hospitals, where the national transplant units are located, were least positive towards organ donor advocacy. One explanation might be that these large hospitals have a high staff turnover and employ fairly young nurses with little professional experience. As caring for a POD is demanding work, the lack of professional experience might affect the desire to promote OD. By contrast, local hospitals manage to keep the experienced staff, which might explain the fact that older nurses and those working in local hospitals reported most positive ATODA. This anomaly between types of hospitals, in respect of potential and actual organ donors, will require further study. Closer co-operation between the ICU and the transplant unit, where ICU nurses can see the results of their efforts, might inspire more positive attitudes towards advocacy. The most preferred single action by nurses to promote OD was safeguarding the will and wishes of the POD both actively and by showing positive support for laws and regulations regarding OD that protect the dignity of the deceased. This active approach means that the nurse will take action if the medical treatment does not optimize the organs and will question inadequate care of the POD, to the extent that he/she will argue against all forms of unethical treatment. The nurse will call attention to any team member who hinders the correct and consistent care of the POD. This more authoritarian and professional approach involves expressing the wishes of the POD, if known and bringing the wishes of the deceased and/or the relatives of the deceased in respect of OD, to the attention of the intensive care specialist in the belief that it is the nurse’s responsibility to represent the POD throughout the donation process. The duty of the nurse is to respect the wishes of the POD under all circumstances
and for the nurse to make sure that those colleagues on his/her shifts are aware of the wishes of the deceased or the next of kin. These actions by the nurse promoting OD can be the essential prerequisites leading to OD and should be supported by the ICU organization. Today, there is a critical mismatch between available organs for transplant and acutely or critically ill patients with end-stage organ disease. Patients who may benefit from organ transplantation far outnumber available organs. One crucial cause is non-recognition or delay in determining BD (Flodén et al., 2011b). This non-recognition or delay in BD determination may be addressed through clinician training and frequent clinical assessment to detect early stages of brain-stem herniation refractory to aggressive measures for control of intracranial pressure. Organ donor advocacy activity is another useful approach. Factors leading to positive ATODA were experiences of caring for brain-dead persons and having discussions about OD with relatives. ICU nurses with these experiences should be encouraged to share their knowledge so as to increase professional involvement and develop excellent nursing (Vaartio et al., 2006). Ethical dilemmas surround death in general and BD in particular. Effective functioning in the ICU also involves understanding the behaviour that surrounds mortality, e.g. organ donor advocacy. Central to health care is to respect the patient’s dignity. Achieving a dignified and tolerable death is of great significance. End-of-life issues in the ICU do not require a technological solution, but a social and philosophical one (Gavrin, 2007).
ACKNOWLEDGEMENTS This study was performed within the Swedish nursing research network in OD and organ transplantation. We acknowledge funding from Swedish Research Council for Health, Working Life and Welfare, Stiftelsen för Njursjuka, a foundation for research in end-stage renal failure, the Lennart Jacobssons foundation for research into kidney transplantation and Professor Lars-Erik Gelin memorial foundation. The authors are grateful to Tommy Johansson for statistical advice and Joseph Clark for language review. None of those acknowledged here had any other involvement in the study.
WHAT IS KNOWN ABOUT THIS TOPIC • •
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Caring for a POD is a highly demanding task, emphasizing the importance of preserving the deceased persons dignity by adopting advocacy behaviour. Further, organ donor advocacy has been found to be of crucial importance for the care of a POD and his/her relatives in the ICU.
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Attitudes towards organ donor advocacy
WHAT DOES THIS PAPER ADDS • • • •
This study is the first effort ever to comprehensively grasp the organ donor advocacy behaviour among ICU nurses. This study shows that effective functioning in the ICU also involves understanding the behaviour that surrounds mortality, e.g. organ donor advocacy. Central to end-of-life care is to respect the patient’s dignity. This study suggests that end-of-life issues in the ICU do not require a technological solution, but a social and philosophical one. Our understanding of the care of a POD is increased. Finally, it emphasized the importance of organizing the care of PODs and their relatives in a way that promotes professional involvement and advocacy.
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