- Email: [email protected]
Evaluation of the Motivation to Consent to and to Refuse Organ Donation Among Participants of Educational Meetings Concerning Organ Transplantation
Evaluation of the Motivation to Consent to and to Refuse Organ Donation Among Participants of Educational Meetings Concerning Organ Transplantation d _ I. Milaniaka,b,c,*, E. Wilczek-Ruzyczka , K. Wierzbickia,e, J. Sadowskia,e, B. Kapelaka,e, a,f,g and P. Przybyłowski
From the aCardiovascular Surgery and Transplantology Department, John Paul II Hospital, Krakow, Poland; bFaculty of Health and Medical Science, Andrzej Frycz Modrzewski Krakow University, Krakow, Poland; cInstitute of Health, State Higher Vocational School, Nowy Sacz, Poland; dFaculty of Psychology and Humanities, Andrzej Frycz Modrzewski Krakow University, Krakow, Poland; eMedical College, Jagiellonian University, Krakow, Poland; fFirst Chair of General Surgery, Jagiellonian University, Medical College, Krakow, Poland; gSilesian Center for Heart Diseases, Zabrze, Poland
ABSTRACT Background. Improvement of the consent rate for solid organ donation from deceased donors is a key component of strategies applied in many countries aiming to increase the availability of organs for transplantation. Attitudes toward living and posthumous donation are favorable. Research shows that the outlook on organ donation and the degree of the willingness to become an organ donor are associated with a wide range of variables. The main objective of this study was to identify factors that influence the willingness to donate organs and the reasons for refusing consent. Materials and Methods. The study included 191 participants (135 female and 56 male) aged 16 to 61 years (mean age 26.86 12.88). A cross-sectional study was conducted during educational meetings concerning organ donation that was addressed to students, teachers, and nurses. Survey tools included the Individual Questionnaire: Study of attitudes toward transplantation, consisting of 26 closed questions (with the consent of the Statistical Office in Krakow). Results. In all, 97.4% of the respondents accepted transplantation from living donors, and 95.8% accepted deceased donations. Of the respondents, 78.5% agreed to posthumous life-saving organ donation. There was a significant difference between the respondents’ sex, age, social group, place of living, and the reasons for their willingness to donate organs both posthumously and during their lifetime, as well as reasons for refusal. Conclusions. Our findings showed that the study group in general had favorable views on treatment involving transplantation and declared willingness to make a posthumous organ donation. These views vary depending on demographic variables. The education on the subject of organ and tissue donation has a positive impact on donation and transplantation rates.
O
RGAN transplantation provides a life-saving opportunity for those who have no other options. Men, women, and children of all ages, all ethnicities, and all walks of life have had organ transplantations. The first successful kidney transplantation was performed in Poland in 1966. Since then, more than 25,400 transplantations have been performed in Poland, and success rates have been increasing over a number of years following the procedure, with many
transplant recipients surviving for 25 years and more [1]. Not everyone who needs organ transplantation receives it, due to organ shortage. Nearly 1500 patients are now on *Address correspondence to Irena Milaniak, RN, MSN, PhD, John Paul II Hospital, Department of Cardiovascular Surgery & Transplantation, ul. Pradnicka 80; 31-202 Kraków, Poland. E-mail: [email protected]
0041-1345/16 http://dx.doi.org/10.1016/j.transproceed.2016.01.074
ª 2016 Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
1332
Transplantation Proceedings, 48, 1332e1336 (2016)
MOTIVATION FOR ORGAN DONATION CONSENT/REFUSAL
waiting lists in Poland. The mortality rates among patients waiting for heart, liver, or lung transplants range between 15% and 30% [2]. In 2007, the number of transplantations plunged by 45% following a series of incidents that undermined the public’s confidence in the procedures [1]. Due to legislative initiatives, policy changes, as well as educational and social campaigns, we can observe rising organ donation rates [1,3]. A growing body of research on organ donation has focused on individuals’ attitudes and their willingness to become organ donors [4e6]. In 2012, the Public Opinion Research Centre (CBOS) determined that 74% of the Poles surveyed agreed to have an organ of theirs transplanted after death; nevertheless, over the years we have observed a decrease in percentage agreement. The main reasons for the lack of consent included religion (23%) and reluctance to interfere with the deceased body [7]. Research shows that attitudes toward organ donation and the degree of willingness to register as an organ donor are associated with a wide range of variables, including humanitarian and charitable feelings, formerly performed voluntary actions, secular and religious beliefs, altruism, empathy, fear, willingness to communicate donation intentions to family members, as well anxiety about body integrity and death [3,4,8,9]. Many factors are considered when an individual is making a decision about organ donation. In certain countries, reasons for refusal may be based on strong local cultural and religious beliefs. The following causes are the most common [10]: relatives not wishing surgery to the body, or concerns regarding disfigurement, feelings that the patient had suffered enough already, uncertainty regarding the patient’s wishes, disagreements among the family unit, religious/cultural reasons, dissatisfaction with health care staff and the process, concerns over delayed funeral/burial arrangements, inability to accept death, lack of understanding of brain death, concerns regarding the integrity of the procedure (unfair organ allocation, organ trafficking), and long-standing negative views on organ donation. The literature reviews concerning factors connected with family consent to organ donation divide them into 2 categories: modifiable and nonmodifiable. The modifiable factors identified by Simkin et al in their review [11] are presented below: Providing adequate information on the process of organ donation and its benefits The perceived provision of high-quality care of potential organ donors Ensuring that relatives have a clear understanding of brain death Separating the request for organ donation from death notification Making the request in a private setting Appointing well-trained and experienced professionals (physicians, psychologists, transplant coordinators) to make a request The nonmodifiable factors are mostly related to demographic characteristic of the family and/or the donor.
1333
The following nonmodifiable factors were found in the research: Demographics: familial consent rates were found to be higher when the donor was male, younger, or of white ethnicity [12,13] Certain religions are associated with low rates of consent (i.e. Jehovah’s Witnesses, Shinto) [14,15] Circumstances or reasons of death; consent rates were higher when the cause of death was trauma as opposed nonetrauma-related death [15]. The main objective of the present study was to identify the factors that affect the willingness to donate organs and the reasons for refusal. This knowledge should prove helpful in designing educational interventions aimed at improving organ donation rates. MATERIALS AND METHODS Participants The study included 191 adults (aged 16 to 61 years; 135 female and 56 male) who were recruited from among students, teachers, and nurses during educational meetings concerning organ donation issues held between January 2012 and June 2013. The characteristics of the participants are shown in Table 1.
Instruments The study used a single self-report completed by the participants. The questionnaire titled “Individual Questionnaire: a Study of Attitudes Towards Transplantation” was developed by the Statistical Office in Krakow and was used with its permission. The questionnaire consisted of 27 questions pertaining to demographics (n ¼ 3), age, sex, place of living, and the following issues: attitudes, beliefs, intentions, and medicolegal issues (n ¼ 24). The questions varied in structure, and they were largely assessed on a 5-point scale ranging from 1 (strong agreement) to 5 (strong disagreement), with 3 response options (Yes/No/Don’t Know) or a binomial response (Yes/No).
Statistical Analysis All statistics were carried out using Statistica version 8.0 software and Microsoft Office Excel. The Mann-Whitney U test and the Kruskal-Wallis test were applied to compare the quantitative traits of the subgroups. The c2 test, the Pearson c2 test, and the Fisher test were used to examine qualitative variables. The Shapiro-Wilk test was used to investigate normal distribution and skewness parameters. Multiple regression was used to predict the dependent variable (the willingness to donate organs). The statistical significance level was determined at a ¼ 0.05. Table 1. Characteristics of the Study Participants Subgroup
n (%)
Students 109 (57.1)
Age (SD)
17.80 (2.17)
Sex
Place of Residence (%)
M 51 Urban area 75 (68.8) F 58 Rural area 34 (31.2) Teachers 37 (19.4) 38.91 (12.37) M 3 Urban area 29 (78.37) F34 Rural area 8 (21.62) Nurses 45 (23.6) 39.23 (9.98) M 2 Urban area 33 (73.33) F 43 Rural area 12 (26.67) Total 191 (100.0) 191 Abbreviations: F, female; M, male.
_ MILANIAK, WILCZEK-RUZYCZKA, WIERZBICKI ET AL
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RESULTS Attitudes
The majority of respondents accepted both living (186; 97.4%) and posthumous (183; 95.8%) organ donation as a method of treatment. Willingness to Donate Organs
Almost every respondent was willing to donate organs after death (78.5%). The willingness to donate bone marrow varied among the subgroups (P ¼ .008). Nurses were more likely to answer positively (P < .001) in comparison to students and teachers (64.3% vs 37.1% vs 51.4%). The willingness to become a living donor varied depending on the subgroup (P ¼ .004) and respondent sex (P < .001). No differences in the willingness to donate organs posthumously were recorded in relation to subgroups, sex, or place of living. Of the respondents, 44% intended to donate bone marrow, yet 40.8% limited potential recipients to family members only. A total of 67% agreed to become a living donor, and 11.5% refused consent. Reasons for Willingness to Donate Organs
The reasons for consent to organ donation are shown in Table 2. A statistically significant relationship between sex and reasons for donating organs posthumously (P ¼ .014) in ranking scores was found. Compared to males, females indicated more often “a chance to help others” (64% vs 78%) and “the importance of transplantation in saving lives” (16% vs 17%), whereas “effective social campaigns” (18% vs 5%) was selected less often. There was a significant difference between age and the ranking scores for the reasons for living organ donation (P ¼ .013). The group under 18 years of age indicated this decision to be motivated by the willingness to give support (“the possibility to help others” and “the importance of transplantation in saving lives”), whereas 18-year-olds and older participants based their decision also on a good example set by family members/ friends who had already donated organs. The difference was also shown to exist between sex and the willingness to make a living donation (P ¼ .039). Compared to males, females more often indicated “a chance to help others” (12.84% vs Table 2. Reasons for Consent to Organ Donation Living Item
Frequency
A desire to help others The importance of transplantation in saving lives Effective social campaigns A good example set by family members/friends who have already donated organs Financial gain None of the above Missing data
108 20
Posthumous %
56.5 10.5
1 4
0.5 2.1
1 14 43 191
0.5 7.3 22.5 100
Frequency
124 28 1
14 24 191
59.46%), as well as “the importance of transplantation in saving lives” (3.38% vs 10.14%). The participants living in urban areas more often indicated “the importance of transplantation in saving lives” in comparison to those residing in rural areas, as the motivating factor in making a living organ donation (54.73 vs 17.57, P ¼ .49). The consent to donation of organs from a close family member was declared by 81.15% of the participants. The main reasons for this consent were desire to help others (73.8%) and the ability to reconcile the family member’s death more easily (3.7%). There was a significant difference between the groups in regard to the willingness to consent to posthumous organ donation from a relative. The students indicated a greater willingness to agree to posthumous organ donation in cases in which they were informed of their deceased relative’s consent (38.95% vs 15.79% vs 19.47%). The same reason was indicated more often by women than by men (55.79% vs 18.42; P ¼ .001). Those who were against donating organs of their relatives expressed the following reasons: possible premature confirmation of a family member’s death (25.1%), fear of illegal organ trafficking (17.8%), and fear of violating one’s dignity after death (15.7%). Significant differences were observed between age and lack of consent (P ¼ .22). The group under 18 years of age indicated more often the possible premature confirmation of a family member’s death (17.74% vs 6.99%). Reasons for Refusal of Organ Donation
The reasons for the lack of consent to posthumous organ donation and living donation are presented in Table 3. A statistically significant relationship between the groups and the reasons for refusal of living donation (P ¼ .009) in the ranking scores was found. The students indicated more often the fear of surgery (18.18% vs 8.18% vs 4.55%), whereas nurses indicated more often the fear of illegal organ trafficking (10.91% vs 8.18%,1.82%). The reasons for the lack of consent to posthumous organ donation were significantly different among the groups (P ¼ .03). The students indicated more often religious beliefs (18% vs 0% vs 10%) and the fear of surgery (11% vs 0.92% vs 10%), whereas the nurses indicated more often the fear of illegal organ trafficking (10.09% vs 8.6% vs 6.42%). There was a significant difference between age and ranking scores regarding the reasons for the lack of consent to posthumous
%
69.9 14.7 0.5
7.3 12.6 100
Table 3. Reasons for Refusal of Organ Donation
Item
Religious beliefs Fear of surgery Fear of illegal organ trafficking Medical mistrust Lack of faith in the success of the transplantation None of above
Living Donation
Deceased Donation
n (%)
n (%)
9 33 21 11 5
(4.7) (17.3) (11.5) (5.8) (2.6)
29 (15.2)
8 11 27 4
(4.2) (5.8) (14.1) (2.1)
50 (26.2)
MOTIVATION FOR ORGAN DONATION CONSENT/REFUSAL
organ donation (P ¼ .002). The group under 18 years of age indicated the following reasons: religious beliefs (26.17% vs 1.87%), the fear of illegal organ trafficking (21.5% vs 3.74%), and the fear of injury after death (10.28% vs 5.61%). Moreover, there was a significant difference between sex and the lack of consent to posthumous organ donation (P ¼ .003). Men indicated more often religious beliefs (14.68% vs 13.76%), whereas women indicated the fear of illegal organ trafficking (19.27% vs 5.5%). A multiple-factor analysis was conducted to examine the influence of demographic variables (sex, age, place of living, and groups) on the reasons for the willingness and the lack of consent to organ donation in predicting the willingness to donate. The model accounted for 23% of the variance in the willingness to donate bone marrow (R2 ¼ 0.580; adjusted R2 ¼ 0.231; F1,661; P ¼ .007), 36% of the variance in the willingness to living donation (R2 ¼ 0.653; adjusted R2 ¼ 0.364; F2,260; P < .001), and 36% of the variance in the willingness to donate organs after death (R2 ¼0.658; adjusted R2 ¼ 0.364; F2,237; P < .001). DISCUSSION
In the present work, we have explored factors that can influence both the willingness and the lack of consent to organ donation. The findings reveal that in general, the participants’ responses indicate a more favorable attitude toward organ donation and a greater willingness to donate their organs. Our results support the tendencies already noted in other studies [3,16,17]. Certain differences in willingness have been found between subgroups and sexes, the latter being significantly related to organ donation and transplantation. Women are often the decision makers in the family when it comes to health-related issues. The data revealed that 33% of women discuss organ donation with the family and are aware of the organ donation [18]. According to our findings, women and nurses exhibit the highest predisposition to donating organs. Similar results can be found in other studies [19e22]. In their study, Morgan et al revealed that medical mistrust and a belief in illegal organ trafficking were noted as actual barriers to the willingness to donate organs. In this study, participants were far more likely to provide religious and spiritual reasons to support their willingness to donate organs [23]. In our research, the main reasons for the willingness to donate organs were a desire to help others and the importance of transplantation in saving lives, whereas the reasons for refusal to organ donation indicated by the participants were the fear of surgery and the fear of illegal organ trafficking. In the view of the study participants, the body of the donor would be mutilated and treated badly. This misconception should be corrected. Organs would be removed in a routine operation, and organ donation does not disfigure the body or alter its appearance when presented during an open-casket funeral, making a normal funeral arrangement possible [24].
1335
Sque et al have studied the reasons for family members to decline organ donation from a deceased relative. According to their findings, decisions pertaining to organ donation depend on a number of converging factors in a particular situation, and not necessarily on the views of relatives concerning organ donation or the deceased person’s wishes reported during his or her lifetime, unless the person stated that he or she did not wish to become an organ donor. Therefore, the reported pro-donation views of the family or the deceased in life do not guarantee an organ donation. Protecting the dead body in relation to keeping it whole and intact was the most frequently recurring theme [25]. Our findings indicated that in the case of knowing of their relative’s willingness to become an organ donor, the participants are more likely to agree to donation. Their fears pertain to the possibility of early/premature confirmation of death, the fear of illegal organ trafficking, and the fear of violating one’s dignity after death. The same reasons were observed in a study conducted by Logan et al [10]. Our findings have certain limitations due to the small size of the subgroups. We plan to expand the study population in the future. To conclude, our results suggest that implementation of educational actions, aimed at raising the awareness of the organ donation process, could be beneficial.
REFERENCES [1] Antoszkiewicz A, Czerwi nski J. Organ harvesting and transplantation in Poland in 2014. Newsletter Poltransplant 2015;1:25e41. [2] Czerwi nski J, Wysocka M, Antoszkiewicz A. Transplant Registry. Newsletter Poltransplant 2015;1:58e60. [3] Milaniak I, Przybylowski P, Wierzbicki K. Organ transplant education: the way to form altruistic behaviors among secondary school students toward organ donation. Transplant Proc 2010;42:130e3. [4] Morgan SE, Miller KJ. Beyond the organ donor card: the effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members. Health Commun 2001;14:121e34. [5] O’Carroll RE, Foster C, Mcgeechan G. The “ick” factor, anticipated regret, and willingness to become an organ donor. Health Psychol 2011;30:236e45. [6] Coad L, Carter N, Ling J. Attitudes of young adults from the UK towards organ donation and transplantation. Transplant Res 2013;2:9. [7] Attitudes towards organ transplantation. Data. The Public Opinion Research Center (CBOS), BS/105/2012. [8] Horton RL, Horton PJ. A model of willingness to become a potential organ donor. Soc Sci Med 1991;33:1037e51. [9] Skumanich SA, Kintsfather DP. Promoting the organ donor card: a causal model of persuasion effects. Soc Sci Med 1996;43:401e8. [10] Vincent A, Logan L, Vincent A. Consent for organ donation. Br J Anesth 2012;108:80e7. [11] Simpkin AL, et al. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. BMJ 2009;338: b991. [12] Siminoff LA, et al. Factors influencing families’ consent for donation of solid organs for transplantation. JAMA 2001;286:71e7. [13] Rodrigue JR, Cornell DL, Howard RJ. Organ donation decision: comparison of donor and nondonor families. Am J Transplant 2006;6:190e8. [14] Oliver M, et al. Organ donation, transplantation and religion. Nephrol Dial Transplant 2011;26:437e44.
1336 [15] Oliver M, Ahmed A, Woywodt A. Donating in good faith or getting into trouble: religion and organ donation revisited. World J Transplant 2012;2:69e73. [16] Radecki CM, Jaccard J. Psychological aspects of organ donation. A critical review and synthesis of individual and next of kin donation decisions. Health Psychol 1997;16:183. [17] Cohen EL, Hoffner C. Gifts of giving: the role of empathy and perceived benefits to others and self in young adults’ decisions to become organ donors. J Health Psychol 2013;18:128e38. [18] Radecki BC. Attitudes, beliefs and behaviors surrounding organ donation among Hispanic women. Curr Opin Transplant 2009;14:191e5. [19] Rodrigue JR, Cornell DL, Jackson SI, et al. Are organ donation attitudes and beliefs, empathy, and life orientation related to donor registration status? Prog Transplant 2004;14:56e60. [20] Scisło L, Partyka E, Walewska E, et al. Attitudes and knowledge of rural and urban inhabitants about organ transplantation. Hygeia Public Health 2013;48:40e5.
_ MILANIAK, WILCZEK-RUZYCZKA, WIERZBICKI ET AL [21] Mossialos E, Costa-Font J, Rudisill C. Does organ donation legislation affect individuals’ willingness to donate their own or their relative’s organs? Evidence from European Union survey data. BMC Health Serv Res 2008;8:48. [22] Majchrowicz B, Kalita K. Attitudes of selected social groups towards their informed consent to harvesting organs for transplantations. Overview of Medical University of Rzeszow and the National Medicines Institute in Warsaw, Rzeszow. World J Transplant 2012;1:86e97. [23] Morgan SE, Harrison TR, Afifif WA, Long SD, Stephenson MT. In their own words: the reasons why people will (not) sign an organ donor card. Health Commun 2008;23: 23e33. [24] West R, Burr G. Why families deny consent to organ donation. Aust Crit Care 2002;15:27e32. [25] Sque M, Long T, Payne S, Allardyce D. Why relatives do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’? J Adv Nurs 2008;61:134e44.
From the aCardiovascular Surgery and Transplantology Department, John Paul II Hospital, Krakow, Poland; bFaculty of Health and Medical Science, Andrzej Frycz Modrzewski Krakow University, Krakow, Poland; cInstitute of Health, State Higher Vocational School, Nowy Sacz, Poland; dFaculty of Psychology and Humanities, Andrzej Frycz Modrzewski Krakow University, Krakow, Poland; eMedical College, Jagiellonian University, Krakow, Poland; fFirst Chair of General Surgery, Jagiellonian University, Medical College, Krakow, Poland; gSilesian Center for Heart Diseases, Zabrze, Poland
ABSTRACT Background. Improvement of the consent rate for solid organ donation from deceased donors is a key component of strategies applied in many countries aiming to increase the availability of organs for transplantation. Attitudes toward living and posthumous donation are favorable. Research shows that the outlook on organ donation and the degree of the willingness to become an organ donor are associated with a wide range of variables. The main objective of this study was to identify factors that influence the willingness to donate organs and the reasons for refusing consent. Materials and Methods. The study included 191 participants (135 female and 56 male) aged 16 to 61 years (mean age 26.86 12.88). A cross-sectional study was conducted during educational meetings concerning organ donation that was addressed to students, teachers, and nurses. Survey tools included the Individual Questionnaire: Study of attitudes toward transplantation, consisting of 26 closed questions (with the consent of the Statistical Office in Krakow). Results. In all, 97.4% of the respondents accepted transplantation from living donors, and 95.8% accepted deceased donations. Of the respondents, 78.5% agreed to posthumous life-saving organ donation. There was a significant difference between the respondents’ sex, age, social group, place of living, and the reasons for their willingness to donate organs both posthumously and during their lifetime, as well as reasons for refusal. Conclusions. Our findings showed that the study group in general had favorable views on treatment involving transplantation and declared willingness to make a posthumous organ donation. These views vary depending on demographic variables. The education on the subject of organ and tissue donation has a positive impact on donation and transplantation rates.
O
RGAN transplantation provides a life-saving opportunity for those who have no other options. Men, women, and children of all ages, all ethnicities, and all walks of life have had organ transplantations. The first successful kidney transplantation was performed in Poland in 1966. Since then, more than 25,400 transplantations have been performed in Poland, and success rates have been increasing over a number of years following the procedure, with many
transplant recipients surviving for 25 years and more [1]. Not everyone who needs organ transplantation receives it, due to organ shortage. Nearly 1500 patients are now on *Address correspondence to Irena Milaniak, RN, MSN, PhD, John Paul II Hospital, Department of Cardiovascular Surgery & Transplantation, ul. Pradnicka 80; 31-202 Kraków, Poland. E-mail: [email protected]
0041-1345/16 http://dx.doi.org/10.1016/j.transproceed.2016.01.074
ª 2016 Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
1332
Transplantation Proceedings, 48, 1332e1336 (2016)
MOTIVATION FOR ORGAN DONATION CONSENT/REFUSAL
waiting lists in Poland. The mortality rates among patients waiting for heart, liver, or lung transplants range between 15% and 30% [2]. In 2007, the number of transplantations plunged by 45% following a series of incidents that undermined the public’s confidence in the procedures [1]. Due to legislative initiatives, policy changes, as well as educational and social campaigns, we can observe rising organ donation rates [1,3]. A growing body of research on organ donation has focused on individuals’ attitudes and their willingness to become organ donors [4e6]. In 2012, the Public Opinion Research Centre (CBOS) determined that 74% of the Poles surveyed agreed to have an organ of theirs transplanted after death; nevertheless, over the years we have observed a decrease in percentage agreement. The main reasons for the lack of consent included religion (23%) and reluctance to interfere with the deceased body [7]. Research shows that attitudes toward organ donation and the degree of willingness to register as an organ donor are associated with a wide range of variables, including humanitarian and charitable feelings, formerly performed voluntary actions, secular and religious beliefs, altruism, empathy, fear, willingness to communicate donation intentions to family members, as well anxiety about body integrity and death [3,4,8,9]. Many factors are considered when an individual is making a decision about organ donation. In certain countries, reasons for refusal may be based on strong local cultural and religious beliefs. The following causes are the most common [10]: relatives not wishing surgery to the body, or concerns regarding disfigurement, feelings that the patient had suffered enough already, uncertainty regarding the patient’s wishes, disagreements among the family unit, religious/cultural reasons, dissatisfaction with health care staff and the process, concerns over delayed funeral/burial arrangements, inability to accept death, lack of understanding of brain death, concerns regarding the integrity of the procedure (unfair organ allocation, organ trafficking), and long-standing negative views on organ donation. The literature reviews concerning factors connected with family consent to organ donation divide them into 2 categories: modifiable and nonmodifiable. The modifiable factors identified by Simkin et al in their review [11] are presented below: Providing adequate information on the process of organ donation and its benefits The perceived provision of high-quality care of potential organ donors Ensuring that relatives have a clear understanding of brain death Separating the request for organ donation from death notification Making the request in a private setting Appointing well-trained and experienced professionals (physicians, psychologists, transplant coordinators) to make a request The nonmodifiable factors are mostly related to demographic characteristic of the family and/or the donor.
1333
The following nonmodifiable factors were found in the research: Demographics: familial consent rates were found to be higher when the donor was male, younger, or of white ethnicity [12,13] Certain religions are associated with low rates of consent (i.e. Jehovah’s Witnesses, Shinto) [14,15] Circumstances or reasons of death; consent rates were higher when the cause of death was trauma as opposed nonetrauma-related death [15]. The main objective of the present study was to identify the factors that affect the willingness to donate organs and the reasons for refusal. This knowledge should prove helpful in designing educational interventions aimed at improving organ donation rates. MATERIALS AND METHODS Participants The study included 191 adults (aged 16 to 61 years; 135 female and 56 male) who were recruited from among students, teachers, and nurses during educational meetings concerning organ donation issues held between January 2012 and June 2013. The characteristics of the participants are shown in Table 1.
Instruments The study used a single self-report completed by the participants. The questionnaire titled “Individual Questionnaire: a Study of Attitudes Towards Transplantation” was developed by the Statistical Office in Krakow and was used with its permission. The questionnaire consisted of 27 questions pertaining to demographics (n ¼ 3), age, sex, place of living, and the following issues: attitudes, beliefs, intentions, and medicolegal issues (n ¼ 24). The questions varied in structure, and they were largely assessed on a 5-point scale ranging from 1 (strong agreement) to 5 (strong disagreement), with 3 response options (Yes/No/Don’t Know) or a binomial response (Yes/No).
Statistical Analysis All statistics were carried out using Statistica version 8.0 software and Microsoft Office Excel. The Mann-Whitney U test and the Kruskal-Wallis test were applied to compare the quantitative traits of the subgroups. The c2 test, the Pearson c2 test, and the Fisher test were used to examine qualitative variables. The Shapiro-Wilk test was used to investigate normal distribution and skewness parameters. Multiple regression was used to predict the dependent variable (the willingness to donate organs). The statistical significance level was determined at a ¼ 0.05. Table 1. Characteristics of the Study Participants Subgroup
n (%)
Students 109 (57.1)
Age (SD)
17.80 (2.17)
Sex
Place of Residence (%)
M 51 Urban area 75 (68.8) F 58 Rural area 34 (31.2) Teachers 37 (19.4) 38.91 (12.37) M 3 Urban area 29 (78.37) F34 Rural area 8 (21.62) Nurses 45 (23.6) 39.23 (9.98) M 2 Urban area 33 (73.33) F 43 Rural area 12 (26.67) Total 191 (100.0) 191 Abbreviations: F, female; M, male.
_ MILANIAK, WILCZEK-RUZYCZKA, WIERZBICKI ET AL
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RESULTS Attitudes
The majority of respondents accepted both living (186; 97.4%) and posthumous (183; 95.8%) organ donation as a method of treatment. Willingness to Donate Organs
Almost every respondent was willing to donate organs after death (78.5%). The willingness to donate bone marrow varied among the subgroups (P ¼ .008). Nurses were more likely to answer positively (P < .001) in comparison to students and teachers (64.3% vs 37.1% vs 51.4%). The willingness to become a living donor varied depending on the subgroup (P ¼ .004) and respondent sex (P < .001). No differences in the willingness to donate organs posthumously were recorded in relation to subgroups, sex, or place of living. Of the respondents, 44% intended to donate bone marrow, yet 40.8% limited potential recipients to family members only. A total of 67% agreed to become a living donor, and 11.5% refused consent. Reasons for Willingness to Donate Organs
The reasons for consent to organ donation are shown in Table 2. A statistically significant relationship between sex and reasons for donating organs posthumously (P ¼ .014) in ranking scores was found. Compared to males, females indicated more often “a chance to help others” (64% vs 78%) and “the importance of transplantation in saving lives” (16% vs 17%), whereas “effective social campaigns” (18% vs 5%) was selected less often. There was a significant difference between age and the ranking scores for the reasons for living organ donation (P ¼ .013). The group under 18 years of age indicated this decision to be motivated by the willingness to give support (“the possibility to help others” and “the importance of transplantation in saving lives”), whereas 18-year-olds and older participants based their decision also on a good example set by family members/ friends who had already donated organs. The difference was also shown to exist between sex and the willingness to make a living donation (P ¼ .039). Compared to males, females more often indicated “a chance to help others” (12.84% vs Table 2. Reasons for Consent to Organ Donation Living Item
Frequency
A desire to help others The importance of transplantation in saving lives Effective social campaigns A good example set by family members/friends who have already donated organs Financial gain None of the above Missing data
108 20
Posthumous %
56.5 10.5
1 4
0.5 2.1
1 14 43 191
0.5 7.3 22.5 100
Frequency
124 28 1
14 24 191
59.46%), as well as “the importance of transplantation in saving lives” (3.38% vs 10.14%). The participants living in urban areas more often indicated “the importance of transplantation in saving lives” in comparison to those residing in rural areas, as the motivating factor in making a living organ donation (54.73 vs 17.57, P ¼ .49). The consent to donation of organs from a close family member was declared by 81.15% of the participants. The main reasons for this consent were desire to help others (73.8%) and the ability to reconcile the family member’s death more easily (3.7%). There was a significant difference between the groups in regard to the willingness to consent to posthumous organ donation from a relative. The students indicated a greater willingness to agree to posthumous organ donation in cases in which they were informed of their deceased relative’s consent (38.95% vs 15.79% vs 19.47%). The same reason was indicated more often by women than by men (55.79% vs 18.42; P ¼ .001). Those who were against donating organs of their relatives expressed the following reasons: possible premature confirmation of a family member’s death (25.1%), fear of illegal organ trafficking (17.8%), and fear of violating one’s dignity after death (15.7%). Significant differences were observed between age and lack of consent (P ¼ .22). The group under 18 years of age indicated more often the possible premature confirmation of a family member’s death (17.74% vs 6.99%). Reasons for Refusal of Organ Donation
The reasons for the lack of consent to posthumous organ donation and living donation are presented in Table 3. A statistically significant relationship between the groups and the reasons for refusal of living donation (P ¼ .009) in the ranking scores was found. The students indicated more often the fear of surgery (18.18% vs 8.18% vs 4.55%), whereas nurses indicated more often the fear of illegal organ trafficking (10.91% vs 8.18%,1.82%). The reasons for the lack of consent to posthumous organ donation were significantly different among the groups (P ¼ .03). The students indicated more often religious beliefs (18% vs 0% vs 10%) and the fear of surgery (11% vs 0.92% vs 10%), whereas the nurses indicated more often the fear of illegal organ trafficking (10.09% vs 8.6% vs 6.42%). There was a significant difference between age and ranking scores regarding the reasons for the lack of consent to posthumous
%
69.9 14.7 0.5
7.3 12.6 100
Table 3. Reasons for Refusal of Organ Donation
Item
Religious beliefs Fear of surgery Fear of illegal organ trafficking Medical mistrust Lack of faith in the success of the transplantation None of above
Living Donation
Deceased Donation
n (%)
n (%)
9 33 21 11 5
(4.7) (17.3) (11.5) (5.8) (2.6)
29 (15.2)
8 11 27 4
(4.2) (5.8) (14.1) (2.1)
50 (26.2)
MOTIVATION FOR ORGAN DONATION CONSENT/REFUSAL
organ donation (P ¼ .002). The group under 18 years of age indicated the following reasons: religious beliefs (26.17% vs 1.87%), the fear of illegal organ trafficking (21.5% vs 3.74%), and the fear of injury after death (10.28% vs 5.61%). Moreover, there was a significant difference between sex and the lack of consent to posthumous organ donation (P ¼ .003). Men indicated more often religious beliefs (14.68% vs 13.76%), whereas women indicated the fear of illegal organ trafficking (19.27% vs 5.5%). A multiple-factor analysis was conducted to examine the influence of demographic variables (sex, age, place of living, and groups) on the reasons for the willingness and the lack of consent to organ donation in predicting the willingness to donate. The model accounted for 23% of the variance in the willingness to donate bone marrow (R2 ¼ 0.580; adjusted R2 ¼ 0.231; F1,661; P ¼ .007), 36% of the variance in the willingness to living donation (R2 ¼ 0.653; adjusted R2 ¼ 0.364; F2,260; P < .001), and 36% of the variance in the willingness to donate organs after death (R2 ¼0.658; adjusted R2 ¼ 0.364; F2,237; P < .001). DISCUSSION
In the present work, we have explored factors that can influence both the willingness and the lack of consent to organ donation. The findings reveal that in general, the participants’ responses indicate a more favorable attitude toward organ donation and a greater willingness to donate their organs. Our results support the tendencies already noted in other studies [3,16,17]. Certain differences in willingness have been found between subgroups and sexes, the latter being significantly related to organ donation and transplantation. Women are often the decision makers in the family when it comes to health-related issues. The data revealed that 33% of women discuss organ donation with the family and are aware of the organ donation [18]. According to our findings, women and nurses exhibit the highest predisposition to donating organs. Similar results can be found in other studies [19e22]. In their study, Morgan et al revealed that medical mistrust and a belief in illegal organ trafficking were noted as actual barriers to the willingness to donate organs. In this study, participants were far more likely to provide religious and spiritual reasons to support their willingness to donate organs [23]. In our research, the main reasons for the willingness to donate organs were a desire to help others and the importance of transplantation in saving lives, whereas the reasons for refusal to organ donation indicated by the participants were the fear of surgery and the fear of illegal organ trafficking. In the view of the study participants, the body of the donor would be mutilated and treated badly. This misconception should be corrected. Organs would be removed in a routine operation, and organ donation does not disfigure the body or alter its appearance when presented during an open-casket funeral, making a normal funeral arrangement possible [24].
1335
Sque et al have studied the reasons for family members to decline organ donation from a deceased relative. According to their findings, decisions pertaining to organ donation depend on a number of converging factors in a particular situation, and not necessarily on the views of relatives concerning organ donation or the deceased person’s wishes reported during his or her lifetime, unless the person stated that he or she did not wish to become an organ donor. Therefore, the reported pro-donation views of the family or the deceased in life do not guarantee an organ donation. Protecting the dead body in relation to keeping it whole and intact was the most frequently recurring theme [25]. Our findings indicated that in the case of knowing of their relative’s willingness to become an organ donor, the participants are more likely to agree to donation. Their fears pertain to the possibility of early/premature confirmation of death, the fear of illegal organ trafficking, and the fear of violating one’s dignity after death. The same reasons were observed in a study conducted by Logan et al [10]. Our findings have certain limitations due to the small size of the subgroups. We plan to expand the study population in the future. To conclude, our results suggest that implementation of educational actions, aimed at raising the awareness of the organ donation process, could be beneficial.
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