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Characteristics of Living Organ Donors among the UK Population - Research Proposal Example

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This research proposal “Characteristics of Living Organ Donors among the UK Population” investigates the demographic profiles of donors among the British citizens: their attitudes, psychological symptoms, predisposition to diseases and risk-taking behaviors as well as their intention to donate…
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Characteristics of Living Organ Donors among the UK Population
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Characteristics of Living Organ Donors Among the UK Population Abstract This is a research proposal to investigate the characteristics of living organ donors among the UK population. Specifically, this paper proposes to investigate the motivation of living organ donors in the contexts of the living organ donor attitudes, presence of psychological symptoms and risk-taking behaviors. The relationship of these attributes to the intent of the sample to participate in living organ donation will also be investigated. Furthermore, the relationship between the demographic profiles of the sample, their intended recipients and their intent to donate will also be explored. This paper proposes a descriptive correlational study to be conducted among the UK population of legal age. Background Organ transplantation is needed for conditions where bodily organs have failed functioning by reason of illness or injury. Oftentimes, organ transplant becomes the only remaining treatment modality for patients with end stage organ conditions (WHO, 2010) especially in liver and heart failures. It is also considered as the treatment of choice end-stage renal disease (ESRD) patients by virtue of cost-effectiveness, lifespan and quality of life (Collins & Johntson, 2009; WHO, 2010). Renal (kidney) transplants ranks first in the most performed organ transplantation in the world, followed by liver transplants. Aside from ESRD, renal tumors can also be treated with renal transplantation (Collins & Johnston, 2009). Liver transplants, on the other hand, are indicated for patients with end-stage acute or chronic kidney failure (Heaton& Maguire, 2002). Organ donation can be either cadaveric or living. Cadaveric organ donation is the procurement of organs from the bodies of deceased persons, either from brain-dead person with still beating hearts, or from non-heart beating donors (Collins & Johnston, 2009; Devey & Wigmore, 2009), while living organ donation involves the procurement of organs from healthy, living donors. Both organs and tissues can be donated by a human donor. Donatable organs from cadavers include the heart, kidney, liver, lungs, pancreas and small intestine (New York Organ donor Network Inc, 2007a). Tissues that can be procured from cadaveric donors include the corneas, heart valves, cardiovascular tissues, bone and musculoskeletal tissues, and the skin (New York Organ donor Network Inc, 2007b). Kidneys, a segment of the liver or lung, pancreas, bone marrow and intestines- these are organs that can be donated by live donors (Transplant Living; Troug, 2005). Living donor liver transplantation broke new ground in the year 1988-1999. But the practice of live organ transplantation is not new. In fact Dr. Joseph E. Murray performed the first kidney transplant in 1954 using a live identical twin as the donor (“Joseph E. Murray”, 2010). During that time, only closely related (twin) living donations have an assurance of success because of the unavailability of immunosuppressive therapy at the time (Land, 1989). The advent of immunosuppressive drugs gave way to successful cadaveric organ donation (organs from cadavers). Having no risk for infection, psychological and other complications that living organ donors face, cadaveric organ donation has become the preferred way of procuring organs for transplantation. However, the number of patients waiting for an organ is mounting by the minute, and the supply of cadaveric organ donations is short. Currently, there are more than 10, 000 patients waiting for a transplant and every day in the United Kingdom (UK), 3 of them might die before an organ becomes available (Department of Health, 2009, National Health Service, 2009). Even with the UK government’s campaign for increase awareness on the importance of organ donation and to encourage the population to register as organ donors, there is still a big difference between the patients in need of new organs, and the available organs from cadaver donors (Hope, 2009; NHS 2009). Because of this situation, countries, including the UK, have seen an increase in the number of willing living organ donors not only from families, friends and loved ones, but also from strangers or what is also called altruistic donations (United Network for Organ Sharing, 2009). At the same time, advancement in the way that the kidneys are procured, from a full surgical procedure, to a laparoscopy-assisted techniques have made it more favorable for the prospective donors (Berney T, Malaise J, Mourad M, et al.). In September of 2006, the enactment of the Human Tissue acts permitted altruistic organ donation in the UK. This brought about stringent clinical assessment and psychiatric evaluation processes to ensure that the living organ donors are not being coerced to donate, can give their consent voluntarily, and fully understands the risks involved (HTA, 2009; Roff, 2007). In December of 2009, the HTA reported a landmark 3,000 living donation approval. That means there are one in three kidney transplants coming from living kidney donors. The 2008-2009 data on organ transplantation (DH, 2009) reveals that there have been a record 12% increase in living organ donations compared to previous years with 961 live donors giving up a kidney or a segment of their lung or liver, accounting for more than half of all donations. Specifically, living donor kidney donations have increased from 589 in 2005-2006, to 971 in 2008-2009 and currently represent 37% of all kidney transplants in the UK (NHS, 2009). Living liver donation, on the other hand, have increased from 27 in 2007-2008 to 36 approved living organ donors in 2008-2009 (HTA, 2009). Living organ donations is either directed or non-directed. With directed organ donation, the donor can be biologically related to the recipient, as in the case of brothers, sisters, parents and adult children. It can also be a relationship other than biological such as in organ donations from a spouse or significant other, friends, co-workers or acquaintances (Troug, 2009; UNOS, 2009). Non-directed or altruistic organ donation, on the other hand, involves the donation of organs to an anonymous recipient in the transplant list, from a stranger who have no prior social relationship with the recipient (Troug, 2009; UNOS, 2009). As of 2009, the UK have seen a 5% rise in the living related donor adult transplant cases, and a 20% increase in the unrelated living donor adult transplants (NHS, 2009). In 2009, there were 15 approved altruistic organ donors by the HTA (HTA, 2009) As the incessant rise in living organ donation is evident, concerned individuals and agencies must also be wary of the ethical concerns involved in this type of organ donation. Specifically, there is raising concern about the motivations of living organ donors. Directed organ donors may be driven by the family or loved ones’ feeling of obligation to the family member or friend. This can be a form of coercion in such a way that the donors are not fully willing to do the donation, but are only forced to do so because of explicit or implicit pressure arising from the close relationship with the recipient. On the other hand, non-directed living organ donation may have different driving factors, but are equally requiring of ethical examination. The motivation to subject one’s own safety to extend another’s life may be driven by the person’s attitudes, psychological characteristics and risk taking behaviors. It is therefore necessary to explore these characteristics in order to have a solid profile of the potential donor population, to ensure that the organ donation is actually related to altruism and not by other unethical impetus. The purpose of this study is to explore the characteristics of directed and non-directed living organ donors in the UK. Specifically, it aims to answer the following questions: 1. What are the demographic characteristics of the potential living organ donors in terms of? a. Age b. Gender c. Race d. Educational attainment e. Socio-economic status f. Marital Status g. Religion h. Intent to donate i. Intended recipients 2. What are the attitudes regarding altruism among the potential living organ donors? 3. What is the prevalence of psychological symptoms among the potential living organ donors? 4. What are the risk-taking characteristics among the potential living organ donors? 5. What are the motivations for living organ donation among the potential living organ donors? 6. Is there a relationship between the demographic characteristics of the potential living organ donors and their intent to participate in living organ donation? 7. Is there a relationship between the attitudes towards altruism of the potential living organ donors and their intent to participate in living organ donation? 8. Is there a relationship between the prevalence of psychological symptoms among the potential living organ donors and their intent to participate in living organ donation? 9. Is there a relationship between the risk-taking behaviors of the potential living organ donors and their intent to participate in living organ donation? 10. Is there a relationship between the motivation of the potential living organ donors and their intent to participate in living organ donation? Literature Review Living organ donation appears to be a hopeful solution to the long list of waiting organ recipients and the long wait for cadaveric donors. Directed and non-directed donations of blood and bone marrow are pretty acceptable practices of organ donations. They’re minimally invasive and fairly safe procedures. However, when the organ donation involves cutting open the donor in order to procure the organ, it’s a totally different story. The motivation for living organ donation whether among emotionally-bond individuals or among strangers is a noteworthy concern. In particular, concerns about exploitation and coercion have been raised. Several studies have identified a number of reasons for organ donors. 1. Risk and complications of living organ donation It is important to discuss the possible risks and complications of live organ donation when talking about the motivations of living organ donors. As with other surgeries, even for elective ones such as organ donation, there will always be medical risks and complications involved. For one, there are the potential life-threatening post-operative complications such as bleeding and wound infection (Andreassen, 2007; Sommerer, Wiesel, Schweitzer-Rothers, Ritz & Zeier, 2003). Aside from that, there are the potential risks for the specific organ donated. The risk of death for a kidney donor, for instance, is tagged at 1:3000 (HTA, 2009). Other risks include an increase of 2-3 mmHg in the blood pressure of live kidney donors has been documented, as well as a decline in renal function among kidney donors (Hartmann, Fauchald, Westlie, Brekke & Holdaas, 2003; Sommerer, et al, 2003). The risk of death for live liver donation, on the other hand, is much higher than that of a kidney donation. It is reported that living liver donors are at risk of death at one for every 200 adult to adult donors, and one of 500 in adult to child donors (HTA, 2009). Other possible complications in living liver donations include abdominal bleeding, narrowing of the bile duct and intestinal problems (UNOS, 2009) Aside from medical risks and complications, there is also a potential for psychological complications among organ donors in the immediate post-operative period, and even long after the donation (UNOS, 2009). It has been reported that feeling of regret regarding the organ donation among organ donors is about 5% and that most regrets are due to disappointment from unsuccessful transplants (Andreassen, 2007; Sommerer, et. al., 2003). There are also reported cases of depression and anxiety among organ donors, which may be related to self-image and lifestyle changes (Boulware, 2005; Vizri et. al, 2010). Even laparoscopic donor surgeries are not entirely free of possible complications. Complications of laparoscopic donor surgeries that have been documented include wound infection, pneumonia and blood transfusion (Hadjianastassiou, Johnson, Rudge, & Mamode, 2007). 2. Motivation and characteristics of living organ donors Societal norms dictate man’s obligations of giving, receiving and reciprocating (Crombe & Franklin, 2006; Gill & Lowes, 2008). This societal obligation dictates a compulsion among family members, social relations, and even strangers to give the gift of a second chance at life, to a point disregarding the potential harm that this “gifting” can bring about. The societal drive to gift giving may applicable to strangers as well. For parents or close relatives and friends, the compulsion to risk one’s life may be easier to understand. However, the willingness of a stranger to expose one’s self to a potentially harmful procedure, not to mention the loss of a vital organ, without any physical nor psychological benefits in return, have raised some concerns (Henderson, et. al, 2003). Some individuals may be genuinely driven by altruism. Studies have shown that motivation for stranger are personal experiences with transplantation or organ donation, reciprocity or paying back for good deeds from other people, or wanting to be a good example to others (Henderson, et. al, 2003). Others thrive at the fact that they are given a chance to be a hero. It is psychologically uplifting, improves self-esteem and provides the donor a sense of affirmation (Neyhart, 2004). Shimazono (2008) investigated the anthropology of gift among living related organ donors in the Philippines in the context of the relationship between the donor and the recipient, and the relationship between the recipient and the organ donated. This study showed that that the concept of gift-giving is two-fold, the internal drive to repay a debt or the gift of life received from the organ donation, and the desire of the gift-giver to see the gift being cherished more that receiving payment for it. Similarly, Gill & Lowes (2008) conducted a phenomenological, longitudinal study to provide a framework for donor-recipient relationships in live related organ donation. The sample consisted of 55 donor and recipients undergoing kidney transplants in a transplant centre in South-West England. This study found that the donors are more readily willing to donate once the condition and need of the recipients were known. Recipients, on the other hand, were more hesitant because of concern for the donors’ lives. The procedure provided satisfaction for both the donors and the recipients, and did not prove to be a detriment to the relationship between the donor and the recipient. The study by Henderson, et. al, (2003) investigated the motivations of living anonymous kidney donors for the purpose testing the belief that people who willingly face physical and psychological risks and complications, and offer their organ to total strangers must be psychologically unstable. Measures of psychological, psychological health, psycho-social suitability, and commitment to donation, and their motivation for wanting to be living organ donors were analyzed and found that potential living organ donors are psychologically stable, are driven by altruistic motivations and have a stable spiritual belief system. Similarly, Jendrisak et al. (2006) evaluated the characteristics of people who expressed interest in altruistic non-directed organ donation through the second chance St. Louis or SCSL, a program which provides center evaluation educational, psychosocial evaluation and medical screening services for potential organ donors. The donors expressed willingness to go through the organ donation for the purpose of helping someone in need. Psyhometric testing revealed that they are mostly content and pleased with their lives, and are attentive to the needs of others. They are also not risk or thrill seekers. Interestingly, it also revealed that they are moderately high in reward dependence and are not specially tied to religious or spiritual affiliations. Psychologic testing also revealed that 84% were free of previous or current psychological conditions, strengthening previous evidence that people who are willing to do altruistic donations are psychologically stable. All of the donors screened also know someone who has undergone transplantation, or needed one, were on the blood marrow registry, or were blood donors. In another study by Boulware, et. al (2005), the attitudes, psychology, and risk taking behaviors of potential relative and stranger live kidney donors were investigated and compared with that of the general public. There were no significant differences between the relatives’ and strangers’ attitudes towards altruism, spirituality and trust of healthcare providers when compared to each other and the general public. Strangers and the general public reports of depression and anxiety did not yield any significant difference. On the other hand, relatives were less likely to report symptoms of depression and anxiety than the general public and even when compared to strangers. In terms of willingness to incur the risk of organ donation, both the relatives and strangers were more willing than the general public. In a retrospective study, Achille e. al, (2007), explored the psychosocial profiles of 39 male and female living kidney donors through questions regarding demographic characteristics (age, education, marital status, employment and number of children) and about decision to donate and satisfaction with donation. Altruism, self-esteem, family dynamics and endorsement of gender-stereotyped roles were measured using standardized instruments. Findings of this study did not reveal any significant difference between the psychological characteristics of the male and female kidney donors. Both genders are comparable in regards to the different attributes measured. Paid organ donation Nevertheless, a number of studies have identified several reasons for non-directed donations that are not totally motivated by unselfishness. These include a sense of obligation and wanting public attention, exploitation and coercion of the donors, as well as donors requesting or expecting compensation for the donation (Hoyer, 2006). Living organ donation is conceptually an autonomous decision. When the intent to donate is influenced by something other than a genuine resolution to help someone, then it becomes ethically questionable. The introduction of transplant tourism, where patients travel to countries like Malaysia, India, Singapore, Japan and the Philippines where there is a cheaper and more readily available kidney from a living organ donor (Asako, 2009; “Commercial organ transplantation”, 2009). Canales, Muna T.; Kasiske, et al. (2006) looked into the clinical outcomes of 10 American patients who underwent organ transplantation outside the US and found that kidney function and the graft survival rate among these patients were generally good. Majority of the overseas transplantation were performed in Pakistan (8 patients). While overseas transplantations are generally successful, still, there is a question to whether this does not violate any ethical principles. It is still unlawful in most countries and in most cases of live organ donation; only those of directed live organ donation is considered legal. The high success rate or non-closely related organ transplantation and the low risk for both the live donors and the organ recipients somehow provide a justification for compensated organ donation (Hoyer, 2006), and subsequently gave rise to transplant tourism and organ trafficking (Jafar, 2009). In conversations with organ vendors in Pakistan, Moazam, Zaman and Jafarey found that most of them are from impoverished social conditions and saw the selling of an organ as a way of saving themselves and their families from poverty. Majority of the organ vendors interviewed were between 20-40 years old and are mostly illiterate. Sixteen of the 32 organ vendors interviewed have extended practice of the organ selling to other family members. At least ten of them were referred for psychiatric evaluation while only 3 were referred for proteinuria or hematuria. However, none of them went to their follow-up appointments. Kidney vendors often face medical problems and without the means to seek for medical attention. They also, most often become unemployed because of the limitations of their surgery, and because of the nature of jobs that they can solicit, being that these donors are most often illiterate and uneducated (Scheper-Hughes, 2003). Amidst international attention to the rampant and unabashed selling of kidneys among poverty stricken male population in the Philippines, the Philippine government has finally imposed a ban on the organ transplant to foreigners in an effort to curtail organ selling (Medindia, 2009). 4. Nursing responsibility An informed consent is an essential component in ensuring that the living organ donor is consenting freely and voluntarily to a procedure that he fully understands. For some donors, there have reported incidences of coercion, with family members refusing to talk to potential related donors who have second thoughts about donating an organ (Conrad & Murray, 1999). Medical practitioners have the main responsibility of ensuring that potential living organ donors are well informed of the risks involved, whether life-threatening or not. At the same time, there is also a need to ascertain that the donors are driven by the genuine desire to donate, and not by the sense of responsibility or obligation (Delmonaco & Dew, 2007, Taylor, 2006). Synthesis Living organ donation is steadily relieving the shortage of organs available for transplant and shortens the waiting time among recipients in the organ waiting list. Several ethical issues have been presented in regards to this practice of organ procurement. First come the issue of coercion among the living organ donors, whether by pressure from relatives, from a sense of obligation, or by monetary compensation. In either case, the psychological and altruistic characteristics, as well as the motivation of potential living organ donors must be fully evaluated in order to ensure that the donor has been educated fully about the procedure, it’s risks and consequences, and the freedom of choice of potential organ donors. Several studies presented above have investigated the attributes and motivations of potential and previous living organ donors. In terms of motivation, for most, it is true altruism that drove the donation whether directed or non-directed (Gill & Lowes, 2008; Shimazono, 2008). Other studies reviewed showed that most living organ donors (potential and previous) are psychologically stable and are commonly driven by the need to help out people in need (Boulware, et. al, 2005; Henderson, et. al, 2003; Jendrisak et al., 2006). Risk-taking behaviors that were thought to be a driving factor in wanting to subject one’s self to organ mutilation was also dispelled by the studies reviewed (Boulware, et. al, 2005; Henderson, et. al, 2003; Jendrisak et al., 2006). There were also no significant differences between the psychological attributes in males and female living organ donors (Achille, et. al, 2007). Paid organ donation, on the other hand, paint a different picture. Studies have shown that overseas transplantations are generally successful. That’s the recipients’ clinical outcome. Transplant tourism has received criticism from international bodies for concerns regarding the informed consent and clinical outcomes for the donors (Delmnico & Dew, 2007). Most donors in third world countries like that of Japan, Malaysia and the Philippines are coerced by force or compensation by organ traffickers. This necessitates the development of strict and well-defined legislation on the conduct and ethics of living organ donation and procurement (Jafar, 2009). Methodology This section will present the basic strategies that the researcher will utilize in order to develop evidence that is accurate and interpretable. This section will include the research design, population and sample, and sampling criteria, the setting of the study, the instrument to be used to gather data and the statistical analyses that will be used to analyze the data that will be collected. Research design This study will utilize a quantitative research design specifically, a descriptive correlational design that is intended to explore the relationship between intent to do living organ donation, motivation and the attitudes, psychological and risk taking characteristics of potential living organ donor population in the UK. The advantage of using a quantitative approach is in the empirical testing of data, thereby ascertaining the validity and reliability of results. Population and sample The intended population for this study is the UK population. The intensive campaign of the government to amplify awareness and increase the number of registered organ donors, and the policy of presumed consent, while only applying to cadaveric donation, may be extended to the intention of the population to do living organ donation. Therefore the UK population can be collectively considered as potential living organ donors, whether directional or non-directional. The inclusion criteria that will be utilized in the selection of sample are the following: a. Must be a citizen of the UK, b. Currently residing in the UK, and c. Must be of legal age. Both males and females will be considered for inclusion. Those who have participated in living organ donation as a donor will be excluded from this study. The Slovin’s formula will be used to determine the sample size using the equation below: n = N / (1+Nα 2) Where: n = number of samples N = total population α = margin of error The α will be set at 0.05 permitting a 5% margin of error. The sample size computed through the Slovin’s formula will be drawn from the 2008 census data from the Office for National Statistics. In order to ensure that a representative sample from each country is drawn, this study will utilize a stratified random sampling technique. The population will be divided into strata based on their country of residence (UK, England, Scotland, Wales & Northern Ireland). A random sample will be drawn from each stratum to represent the proportion of the population of each country through the use of a random number generator program from the Introduction to Nursing Research book by Polit & Beck (2008). Instrumentation This study will be utilizing a modified questionnaire from the studies of Boulware et. Al (2005) and Henderson, et. al (2003). This likert-type questionnaire is composed of three parts. Part I, informed consent, contains the details of the study and the informed consent, as well as questions on the demographic profile of the participants. This includes age, gender, race, educational attainment, socio-economic status, marital status, religion, intent to donate and intended recipients. Part II contains questions on respondent characteristics. Part II-A contains questions to measure the respondents’ attitudes towards altruism. Part II-B contains questions to determine the prevalence of psychological symptoms among the respondents. Part II-C contains questions to determine the risk-taking behaviors of the respondents. Part III, on the other hand, contains questions to explore the motivations for living organ donation among the respondents. Data Analysis For research question number 1, data on demographic characteristics will be analyzed through the use of descriptive statistics specifically distribution, measures of central tendency and percentile. For research questions number 2, 3, 4 and 5, data collected will be analyzed through the use of descriptive statistics specifically distribution and percentile. For research questions number 6, 7, 8 and 9, relationships between intent and the different sample characteristics will be analyzed using a multivariate regression analysis. Ethical Principles 1. Informed consent The researcher will ensure that an informed consent is provided by the sample. The details of the study will be discussed thoroughly and the sample will have an opportunity to ask questions or clarifications. The sample will be informed that their participation is voluntary and that they will not be penalized for non-participation. They can also withdraw their participation from the study at any time without any consequence to them. The contact information of the researcher will also be provided for any questions or clarifications. 2. Confidentiality Confidentiality of all data is also ensured. Only the researcher will have access the information provided by the sample and no identifying information will be revealed for any reason. All information provided will only be used by the researcher to clarify answers to the questionnaire and can never be used against them in any form or shape. 3. Beneficence The researcher will ensure that no harm will come to the sample in any shape or form. Although the questions in this research tends to be personal and sensitive, the researcher ensured that careful phrasing of the questions will minimize or avoid any possibility of psychological distress among the sample. Full disclosure will also be guaranteed to minimize or avoid distress or anxiety among the sample. 4. Autonomy The participation of the sample will be of their own volition and no pressure or any form of coercion will be applied. The researcher will honor the decision of the sample, whether they opt to participate or not, or if they withdraw from the study. References "Joseph E. Murray." Encyclopædia Britannica. 2010. Encyclopædia Britannica [Online] Accesed January 20, 2010 from . Achille, M, Soos, J, Fortin, M, Pâquet, M, & Hérbert, M 2007 Differences in psychosocial profiles between men and women living kidney donors, Clinical Transplantation, vol. 21, no. 3, pp. 314-320. 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Jendrisak, MD, Hong, B, Shenoy, S, Lowell, J, Desai, N, Chapman, W, Vijayan, A, et al. 2006 Altruistic living donors: evaluation for nondirected kidney or liver donation." American Journal of Transplantation, vol. 6, no. 1, pp. 115-120. Kane, F, Clement, G & Kane, M 2008 Live kidney donations and the ethics of care Journal of Medical Humanities, vol. 29, no. 3, pp. 173-188. Kaplan, BS & Polise, K 2000 In defense of altruistic kidney donation by strangers Pediatric Nephrology, vol. 14, no. 6, pp. 518-522. Land, W 1989 The problem of living organ donation: Facts, thoughts, and reflections. Transplant International, vol. 2, no. 3, pp. 168-179 Medindia. 2009 Philippines ban organ transplant to foreigners Organ Donation News. [Online] Accesed January 20, 2010 from http://www.medindia.net/news/Philippines-Ban-Organ-Transplant-to-Foreigners-36152-1.htm Miller, F& Troug, R 2008 Rethinking the ethics of vital organ donations, Hastings Center Report, vol. 38, no. 6, pp. 38-48. 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Characteristics of Living Organ Donors Among the UK Population Research Proposal. https://studentshare.org/health-sciences-medicine/1732098-organ-donation.
“Characteristics of Living Organ Donors Among the UK Population Research Proposal”, n.d. https://studentshare.org/health-sciences-medicine/1732098-organ-donation.
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