Attitude, Self-Image, and Quality of Life of Living ...

Attitude, Self-Image, and Quality of Life of Living Kidney Donors Mary C. Corley R.K. Elswick Carol Campbell Sargeant Susan Scott nterest in living organ donation is related to the potential for reducing the current organ shortage, shortening the waiting time, permitting timing of surgery to optimize the recipients’ health, enabling identification of donors with the greatest histocompatibility, and improving function of the transplanted kidney postoperatively. All are advantages to the kidney recipient. The limited number of cadaver donor kidneys and other organs is adding to the focus on living donors for these scarce organs. This research focused on the psychosocial impact of being a living kidney donor. The purpose of this study was to assess the attitude, self-esteem, and quality of life (QoL) of the kidney donor. The research evaluated the impact of selected demographic ch a racteristics and social desirability on self-concept and QoL.

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Mary C. Corley, PhD, RN, is associate professor, Department of Integrative Systems, School of Nursing, Virginia Commonwealth University, Richmond, VA. R.K. Elswick, PhD, is associate professor, Biostatistic Department, School of Medicine, Virginia Commonwealth University, Richmond, VA. Carol Campbell Sargeant, BSN, is research coordinator/Division of Hepatology, Virginia Commonwealth University, Medical College of Virginia Hospital, Richmond, VA. Susan Scott, BSN, is RNM, Transplant Unit and Clinic, Vascular Unit, Virginia Commonwealth University, Medical College of Virginia Hospital, Richmond, VA. Editor’s Note: Submitted September 1998; accepted October 1999.

NEPHROLOGY NURSING JOURNAL

The purpose of this research was to assess the attitude, self-image, and quality of life of living kidney donors. This research employed an exploratory design. Instruments included Simmons and colleagues’ (1977, 1987) measures on donor attitude and self-image, Ferrans and Powers (1992) scale on quality of life, and Cantril’s (1965) ladder of life. Social desirability was also measured. Fifty-five living kidney donors from one transplant program participated in the research. Donations had been made recently or as long as 25 years ago. The research determined that men were signifi cantly more ambivalent about donating than women. Significantly higher levels of predicted self-esteem and independence were found in African-American donors, those with higher levels of education, and those who had recently donated a kidney. Scores on quality of life were high for all donors, and they expected that their quali ty of life would improve in the next 5 years. Social desirability scores were high for 65% of the donors. The quality of life of donors is high and similar to other healthy persons from reported research. The findings in the difference in self-esteem and independence between those who donated before and after 1990 as well as the social desirability scores are reasons to conduct further research on living donors.

The need for donor kidneys is great considering that 40 , 567 patients are on the waiting list (United Network for Organ Sharing [UNOS ] , 1998a). In 1997, 11, 389 kidney transplants were performed; 3,628 were from living donors (related and unrelated) (UNOS, 1998a). Living kidney donations are responding to both the advantages for the kidney recipient and the need for kidneys. So great is the need for kidneys that Spital (1989 ; 1992; 1993) proposed that unconventional living kidney donors be considered to increase the number of transplants. These donors would include spouses, adult friends, monozygotic twin minors, and non-twin minors. Not all transplant caregivers believe in using nonrelated donors. For example, although 92% of transplant centers believed that living-unrelated kidney donors were an appropriate source of kidneys, only 31% of these centers transplanted kidneys from living-unrelated donors (Bia et al., 1995). In fact, the World Health Organization (1991)

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recommended restricting living organ donation to genetic relatives. Interest in living-related and nonrelated organ donation has broadened from kidney donation to lung, liver, and bone marrow donation (Simmons, Schemmel, & Butterworth, 1993) to increase the availability of organs (Kramer; 1995 ; Russell & Jacob, 1993). This article focuses on the psychological ch a r a cteristics and QoL of living kidney donors from one transplant center. Individuals have donated kidneys successfully since the early stages of the kidney transplant program. Although a few suffer minor complications postoperatively (e.g., atelectasis and urinary tract infection) (Ottelin et al., 1994; Riehle et al., 1990; Tyden & Blom, 1995), the mortality rate is low, ranging from none (Bia et al., 1995; Ottelin et al., 1994 ; Riehle et al., 1990) to 1 death per 1600 donors (Cerilli, 1988). Longterm follow-up also reveals few pathophysiological sequelae (Ottelin et al., 1994; Simmons, Williams, Oler, &

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Jorkasky, 1986) although Gouge and associates (1990) did not find changes in enhanced self-esteem, happiness, or QoL among living donors. The purpose of this study is to describe the p s y chological characteristics and impact of being a kidney donor using the instruments of Simmons, Klein and Simmons’ pioneering research (1977). In addition, the research will describe the QoL of living kidney donors and report on the donor’s level of social desirability. Social desirability refers to the tendency to give responses to questions that are congruent with prevailing social moral views (Polit & Hungler, 1995 ) . This response may reflect an attempt to please the researcher rather than reflect what the person actually does or believes. Russell and Jacob (1993 ) have expressed concern that social desirability may affect a donor’s willingness to donate.

Review of the Literature To understand the donor’s life after nephrectomy, it is important to understand the process of kidney donation. Re s e a r ch pertinent to understanding the living kidney donor’s experience includes informed consent and decision making, family relations and influence, psychological reaction, QoL, and social desirability. Most of the research involves livingrelated kidney donors. With the exception of bone marrow donation, only recently have living, nonrelated donors been considered for other organ donation.

Informed Consent and Decision Making Patient decision-making relative to donating a kidney raises ethical issues because it subjects a healthy normal human being to a surgical procedure, compromising the ethical principle of nonmaleficence or doing no harm. However, the critical need for a kidney is used to counterbalance this argument. Allowing a healthy minor to donate a kidney raises an additional ethical issue. The family often makes the decision about which members should be evaluated outside the view of the transplant team. “The problem of motivation is complex, for no family is completely free of obligations based on guilt, shame, debt, or

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fear” (Eisendrath, Guttman, & Murray, 1969, p. 244). Eisendrath and colleagues (1969) reported that donors felt “called” to donate the kidney; some donors did not feel free to refuse, while others feared that they would not be chosen to donate. In their study of 25 prospective donors, no real decision-making problem existed for the donors, who viewed organ donation as one decision they were unable to refuse (Eisendrath et al., 1969). In their retrospective study of 57 donors, the decision to donate was one that they viewed as having no choice about because of the gravity of the situation (Eisendrath et al., 1969). In addition, almost all agreed that they would do it again. Current problems in life were more likely to be blamed on being a kidney donor if the transplant was not successful. Early research on the process of recruiting living kidney donors focused on the extent to which donors provided consent versus being coerced. Fellner and Marshall’s (1968) preliminary study of donors led them to undertake a longitudinal study (Fellner & Marshall, 1970) of 20 donors, primarily postdonation. They studied six donors before as well as after surgery and 10 who were waiting to donate. They identified a three-stage sequential decision making process: (a) as soon as the seriousness of the family member needing the kidney was identified; (b) first request for participation in the medical selection processes; and (c) family influence on the selection of a donor. Their most surprising finding was that none of the donors weighed alternatives and made a rational decision. Decisions were usually made immediately; however donors could not recall ever really having made a clear decision and none had consulted spouses. The medical team did not view the decision at this point as binding, whereas the donor did. Despite the renal team’s extensive educational process, no donors were dissuaded from donating. Fellner and Marshall (1970) hypothesized that the lack of a rational decision making process could be explained if donating were viewed as moral decision making characterized by awareness of consequences, ascription of responsibility, and moral norms. In a

study of 21 children and 58 adult patients awaiting kidney transplant, Simmons, Hickey, Kjellstrand, and Simmons (1971) found that child recipients did not generate the same crises of decision-making as did adult recipients. Three important features of the decision making involving donation to children were the effect of the spouse on a donor’s decision, the amount of time a potential donor would take to make a decision, and perception on the part of relatives not in the immediate family that donation was not an obligation, even if emotionally close to the recipient. Another possible response to the donor decision was one in which the potential donor delayed making a decision and became “locked into” a decision by participating in the first steps of the testing procedure (Simmons, Klein, & Thornton, 1973). On the other hand, potential donors decided not to donate by failing to keep appointments to be evaluated for organ donation.

Family Relations and Influence Simmons and Klein (1972), in their longitudinal study of families and kidney patients, found that although communication was not good prior to transplant, family cohesion benefited after a successful transplant. However, Simmons et al. (1971) found that the choice of a family donor was often significantly stressful for the family. In a study of 79 kidney transplant patients and 82 persons who considered volunteering, the choice of a family donor was particularly stressful for the nondonor, who could have donated but did not (Simmons, Fulton, & Fu l t o n , 1972). A recent study focused on the family decision making in selecting living related kidney donors (Hilton & Starzomski, 1994). They identified four major decisions: “...whether the recipient would have a kidney transplant; whether it would be a kidney from a living related donor; whether to be tested for compatibility; and which donor to choose among several potential donors” (p. 349). Parentto-child donations were conflict free, whereas sibling donations produced negotiation and deliberation.


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Psychological Reaction Concern about the psychological impact of donation on the kidney donor was the impetus for a number of early research efforts. In a study of a group of potential living related donors and recipients, Wilson, Stickel, Hayes, and Harris (1968) concluded that all potential donors were well informed and their concerns were not any greater than experienced by patients undergoing elective surgery. After the donation, most of the donors in Fellner and Marshall’s study (1970) said that the act was one of the most meaningful experiences of their lives; however, they regretted the short time that they were celebrities. A follow-up of 57 donors revealed that all would do it again (Eisendrath et al., 1969). Only four donors reported negative reactions to being a donor; of interest is that each of their recipients had died. From the high return rate of their mailed survey, Eisendrath et al. (1969) concluded that donors were eager to be more appreciated and to have an opportunity to express their feelings and thoughts. Adolescent donors were more likely than adult donors to experience a boost in self-esteem and feel rewarded by the decision a year later (Berstein & Simmons, 1974). Simmons (1983) reported on the long-term (5-9 years) effects of donation on living donors. The majority reported positive attitudes and little regret. Negative attitudes affecting their relationship with the recipients occurred in a small percentage of cases and were more likely when the transplant was not successful. Donor self-esteem improved significantly from the pretransplant measure and was significantly higher than nondonors. Donors also had significantly less depression. Finally, donors also had a closer relationship with recipients than did nondonors. The use of unrelated living bone marrow donors provides a unique donor pool for study, particularly because many do not know the recipient, unlike kidney donors. Unrelated bone marrow donors’ major reaction to the death of a bone marrow recipient was grief, with only 2 of 23 experiencing guilt for the death (Butterworth, Simmons, & Schimmel, 1992 - 93). In a more complete report NEPHROLOGY NURSING JOURNAL

of their study (Simmons et al., 1993 ) , bone marrow donors’ self-concept reflected a belief in the traits of helpfulness and generosity; for many selfevaluation was enhanced by being a donor.

Living Donors of Other Organs Studies on living liver and lung donors are only now being conducted in the United States. In a Japanese study (Morimoto, Yamaoka, Tanaka, & Ozawa, 1993) of parents donating liver lobes (n = 34), the outcomes were positive – 13 had returned to work, 20 reported no symptoms, and 18 had no anxiety about their health. Of importance in designing living organ donor programs is that 14 of the donors wished to have additional liver function tests as part of postoperative management.

Quality of Life Researchers have not developed a consensus on the meaning of the concept of QoL (Farquhar, 1995). Many things affect QoL ( Jalowiec, 1990 ) ; therefore, a multifaceted approach is necessary to obtain an accurate and comprehensive assessment of the impact of being a living kidney donor. Several researchers in the last 10 years have studied the impact of being a living organ donor on QoL. In a study of kidney recipients and donors, donors were generally positive about donation, but it did not enhance their QoL (Gouge et al., 1990). However, the QoL was similar to national norms for both donors and potential donors. In a 1997 national spousal donor survey (n = 143), P. Terasaki (personal communication, November 12, 1997) reported that the donors’ QoL improved in the categories of marital relations, sex life, and relation with children, and work ability remained the same as prior to donation. All but one donor would advise others to donate; only one experienced severe complications (pain). The importance of assessing the psychological response and QoL of living kidney donors is evident from the increased demand for kidney transplants and a supply that becomes more scarce with time. One way to meet the demand is to encourage the living donor, either related or nonrelated, to donate a kidney. The

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research indicates that kidney donors have few pathophysiological and psychological complications. However, long-term studies on donors and their recipients reveal some psychological repercussions and the philosophical issues continue.

Methods This correlational and exploratory study sought to examine the living kidney donors’ attitudes about donation and their self-esteem and to determine how the living kidney donors’ QoL compared to other healthy individuals. All living kidney donors (n = 72), related and unrelated, who had donated a kidney through the Medical College of Virginia kidney transplant program were invited to participate in the study. Length of time postdonation ranged from several months to 25 years. These donors were contacted by the kidney transplant coordinators, who monitor the progress of kidney transplant recipients. The kidney transplant program studied has been in existence since 1964. In 1998, they performed 49 kidney transplants, 31% of which were from living donors. Since starting the transplant program in 1964, over 1,200 renal transplants have been done including 262 since 1988 (UNOS, 1998b). Currently, 205 patients are on the waiting list for a kidney and 125 are in the work-up phase. About 9 to 12 donors are living related or nonrelated each year. Seventy-two living kidney donors, only two of whom were unrelated, were known to the transplant coordinators at the time of this research.

Instruments Donor Attitude Scale. The Donor Attitude Scale was developed by Simmons et al. (1977) for a longitudinal study of living kidney donors to measure decision-making and response to donation. Four factors make up the scale: ambivalence, negative feelings posttransplant, perception of oneself as a better person posttransplant, and the black-sheep scale ( e a ch item has 2 to 5 options). C r o n b a ch’s alpha for the factors ranged from .72 to .78 for the first three factors. No reliability figures were available for the black-sheep

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scale. Ambivalence refers to the uncertainty and worries that the potential kidney donor has about donating a kidney. Negative feelings posttransplant refers to the level of regret the donor feels. Perception of oneself as a better person posttransplant is the impact of being a donor on the self-picture as worthwhile. Black sheep donors are those whose motivation is interpreted as an attempt to compensate for past family wrongs and to restore their position in the family. Adult Self-Image Scale. The Adult Self-Image Scale (Simmons et al., 1977) is composed of seven factors: (a) self-esteem (alpha=.79); (b) depressive affect vs. happiness (alpha=.71); (c) control over destiny (alpha=.51); (d) anxiety (alpha=.62 ) ; (e) preoccupation with self (alpha=.64); (f) identity stability (alpha=.62); and (g) independencedependence (alpha=.56). The Adult Self-Image Scale has multiple responses in a Likert-type format. The current investigators administered the scales in a paper-pencil approach. Ferrans and Powers Quality of Life Index (QLI). Ferrans and Powers (1992) address the considerations Holzemer and Wilson (1995 ) recommend in measuring QoL: (a) measures of functional status, psychological and social well-being, health perceptions, and disease and treatment-related symptoms; (b) recognition that QoL assessment is essentially subjective; and (c) use of multidimensional models and multidimensional domains. The Ferrans and Powers QLI was developed to measure the QoL of both healthy persons and persons with specific health problems (Ferrans & Powers, 1985 ; 1992). The generic version of the instrument for healthy persons has criterion-related validity (0.75), testretest reliability (0.87), and internal consistency (Cronbach’s alpha 0.93 ) . The instrument has the following four subscales with satisfactory internal consistency: health and functioning, socioeconomic, psychological/spiritual, and family (Cronbach’s alpha .77 to .90). The instrument assesses both satisfaction with components of each of these subscales and the importance of each of these components in a 6-

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point format (1=very dissatisfied/ unimportant; 2=moderately dissatisfied/unimportant; 3=slightly dissatisfied/unimportant; 4=slightly satisfied/important; 5=moderately satisfied/important; and 6=very satisfied/important). The QoL score includes an integration of the satisfaction and importance measures using a formula provided by the developers of the instrument. Ladder of Life. The Ladder of Life measures QoL for the past, present, and future (Cantril, 1965). The scale is similar to a visual analogue scale with 10 equal-interval steps on the ladder; the anchors are “best possible life” and “worst possible life.” Test-retest reliability is r = .70 ( M c Dowell & Newell, 1987). The Ladder Scale has shown considerable stability (a measure of reliability) in life satisfaction in a longitudinal study (Palmore & Kivett, 1977). Self-rated health levels formed the strongest predictors of overall life satisfaction, accounting for two-thirds of the explained variance (Palmore & Luikart, 1972). In another study, the Ladder Scale had significant correlations with objective life circumstances (Atkinson, 1982; Brown, Rawlinson, & Hilles, 1981). The Ladder Scale was used for the following times: the present time, time of deciding to be a donor, 5 years ago, and 5 years from now. M a r l owe-C rowne Social Desirability Scale. In this research, the Marlowe-Crowne Social Desirability Scale measured the need of subjects to obtain approval by responding in a culturally appropriate and acceptable manner (Crowne & Marlowe, 1964 ) . The 30-item scale with true/false response options, has been shortened to 10 items and found to be reliable (coefficient .62 for males; .75 for females) (Strahan & Gerbasi, 1972). Five items of the social desirability scale were used.

Informed Consent Kidney donors were provided with an explanation of the study when they attended a party in their honor. If they did not attend the party, they were contacted by mail and requested to participate in the study. All donors signed an informed consent at the time the instruments were completed. The research

was approved by the Virginia Commonwealth University Committee on Conduct of Human Research.

Results Fifty-five donors returned completed instruments from a sample of 72 (for whom the center had contact information), for a return rate of 76%. Donors ranged in age from 23 to 80 years, with a mean of 49 years (SD = 12.69); 67% were female; 56% had a high school education or less; 71% were Caucasian and 29% AfricanAmerican; and 60% had donated their kidneys from 1990 to 1997. Donor Attitude Scale. Responses on the Donor Attitude Scale reflected that nearly all donors were quite positive about being donors (eg., 95% are generally very happy, and 80% knew right away that they would donate their kidney). The responses to the ‘better person’ items also reflect the belief that they are better persons and donating made life more meaningful. However, the difficulties that some donors experienced are evident in their responses to this scale (see Table 1). For example, 36% were worried about their own health, 24% felt they had given up something for nothing in return, and 20% found it hard to decide to be donors. The ‘blacksheep’ subscale identified 20% who had done something major in their lives that their families did not approve of, 18% who said there had been a time when they did not get along with the recipient, and 6% whose family in recent years did not approve of them. The lower the score on the Donor Attitude Scale, the more positive the donors were about having donated (see Table 2). Since the items for this scale had varying options, reliability was not established. Adult Self-Image Scales. The Adult Self-Image Scale had high reliability (Cronbach’s alpha=.90), and three of the sub-scales also had high reliability: depressive affect or happiness (alpha=.89); self-esteem (alpha=.88 ) ; anxiety (alpha=.84); lower levels occurred for stability (alpha=.67); identity (alpha=.67); preoccupation with self (alpha=.58); control over destiny (alpha=.55); and independence-dependence (alpha=.42). Self-image was analyzed to deter-


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mine which demographic variables were significant. Higher levels of education, African-American race, and recency of donation significantly predicted higher self-esteem scores (t[53]= -2.17, p= . 04; t[ 53] = -2.10, p= . 04; t[ 50] = 2.18, p = .01, respectively). Quality of Life. The living kidney donors reported both a high satisfaction with their QoL overall (M = 25; SD = 4; out of a high of 30) and in relation to the factors of health (M = 25; SD = 4), socioeconomic factors (M = 24.6; SD = 4.2), psychological factors (M = 26; SD = 5) and family issues (M = 26; SD = 5). No significant differences in the QoL variables were identified for age, gender, race, education, or recency of donation. The self-image score significantly differentiated all components of the QoL scale and the overall measure (see Table 3). Ladder of Life. The Cantril Quality of Life scores tended to be quite positive, with the average lowest at the time of donation (M = 7. 44) and only slightly higher now (M = 7. 65 ) . The donors believed that their QoL was better 5 years ago (M = 8.25) and that it would be that level again in 5 years (M = 8.25). The Ferrans and Powers Quality of Life measures correlated only moderately (r = . 40 to .47) with the donor’s evaluation of their current QoL. Social Desirability. The mean score on social desirability for this sample was 7. 85 (SD= 1. 42; range 510; alpha=.56). Thirty-six (65%) scored 7 or more out of 10 on the 5item scale. The social desirability score significantly predicted a higher QoL for the psychological factor (F[ 1,53]=13.43, p= . 0 0 06) and for the overall QoL score (F[1,53]=4.71, p= . 03) (see Table 3).

Discussion On the whole, donors rated their Q o L, including health, psychological, socioeconomic, and family aspects quite high. Attitudes toward donation were favorable although several areas were indicative of concern. They experienced a fairly high self-image. Two major concerns surround the use of living organ donors: the risk of mortality (which is .3%, Jones, Payne, & Matas, 1993) and the possibility of


Table 1 Donor Attitude toward Donation Item

%

Ambivalence Had to think the decision over Relieved if I found out I couldn’t donate Hard to decide Wish they had received a cadaver kidney Wish someone else could have donated Unsure about donating Doubts about donating

20 2 16 2 11 16 20

Negative Feelings Worried about own health Given up something for nothing in return Very unhappy

36 24 2

Better Person as a Result of Donating Better person after donating a kidney Feel more worthwhile Feel almost like a hero Donation was a high point in my life Anyone who donates a kidney is a hero/exceptional sacrifice Think more highly of myself than before the transplant Feel very worthwhile I feel very proud after donating a kidney I feel very brave after donating a kidney I feel very heroic after donating a kidney

35 56 38 71 29 16 71 58 29 15

Black Sheep Period in past when donor did not get along with recipient Family did not approve and accept donor during recent years Family did not approve of something major in donor’s life

18 6 20

coercion to donate (Terasaki, Cecka, Gjertson, & Takemoto, 1995). In this research, the findings on the Donor Attitude Scale supported previous research that, on the whole, donors have positive feelings about donating a kidney (Simmons et al., 1987). In both studies, 70% of donors reported that donation was a high point in their lives. However, the very small percent who had regrets should be a cause for concern. For example, 20% had doubts about donating; however, Simmons et al. (1987) found that 36 % had doubts about being a kidney donor. Similar numbers (11% and 14%, respectively) in this study and Simmons et al. (1987) wished that someone else could have donated. In this study, 36% are worried about their health compared to 14% in the research by Simmons et al. (1987). A small number of donors (n=10) admitted that they had not gotten along

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with the recipient during a period in the past. The ambivalence and black sheep scores on the Donor Attitude Scale are the basis for health professionals to be concerned about living kidney donation. Potential donors who are ambivalent, in a vulnerable relationship with their families, or who expect gratitude for donating may need to be identified prior to donating to address these attitudes. One-fourth of the donors felt they had given up something by donating without getting anything in return, a much higher percentage than Simmons and colleagues (1987) found (5%). The results on the Adult SelfImage Scale were encouraging for the living donor approach. The donors experienced less negative psychological impact than in Simmons et al.’s study (1977), in which 53% ended up with a higher self-image than they had prior to transplant, and 60% are 47

Table 2 Attitude toward Donation, Adult Self-Image, Quality of Life, and Social Desirability among Kidney Donors Scale

M

sd

1.04 65 4.41 .44

1.44 .64 2.97 .71

0-7 0-2 0-10 0-2

0-7 0-6 0-10 0-3

Adult Self-Image 61.2 Self-Esteem 14.91 Happiness 10.60 Control over Destiny 6.93 Anxiety 11.35 Preoccupation/Self 4.74 Stable Identity 9.04 Independence 3.64

14.68 5.19 4.20 2.47 3.41 1.60 1.89 1.01

28-111 5-31 1-24 1-13 6-20 2-10 6-14 3-8

1-40 0-26 0-13 6-28 0-11 0-17 0-14

25.11 25.54 25.54 25.67 25.24

4.09 4.28 5.11 5.42 3.79

11.62-30 14.67-30 6.21-30 8.00-30 15.12-30

Ladder of Life Now Deciding to donate 5 years ago 5 years from now

7.65 7.44 8.25 8.25

2.22 2.41 2.68 2.68

5-10 0-10 0-10 0-10

0-10 0-10 0-10 0-10

Marlowe-Crowne

7.85

1.42

5-10

5-10

Donor Attitude Scale Ambivalence Negative Feelings Better Person Black Sheep

Quality of Life Health SES Psychological Family Overall

Range

Potential Range

Table 3 Factors Predicting Quality of Life Variables Social Desirability to Psychological Factor Social Desirability to Overall QoL Self-Image to Health Self-Image to SES Self-Image to Psychological Self-Image to Family Self-Image to Overall QoL

very happy a year after the donation. It is interesting to note that the results of the study indicate that living kidney donors at this center, who donated after 1990, have a higher selfimage score than those prior to 1990 . No gender differences were identified in contrast to research reported by Johnson, Wicks, Milstead, Hartwig, and Hathaway (1998) in their study of kidney transplant recipients (no

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F

p

R2

Beta

13.43 4.71 45.10 40.97 65.59 7.64 66.91

.0006 .03 .0001 .0001 .0001 .008 .0001

.20 .08 .46 .44 .55 .13 .56

1.619 .763 .186 .193 .259 .131 .192

donors). They found gender differences, with males reporting a higher self-image than females. Only 35% of the donors had high levels of happiness compared to 72% in the research reported by Simmons and colleagues (1977; 1987). Although only 5 items from the Marlowe-Crown Social Desirability Scale were used and the reliability was lower than desired, the number

of donors who scored high on this measure deserve more attention. Should more careful screening be done to prevent this type of people from being asked to donate a kidney, or does it fit their personality to donate and they should be encouraged to donate? These findings taken into consideration with the relatively high scores on social desirability suggest that the selection of living kidney donors needs to be done very cautiously to avoid placing undue pressure or engendering guilt. Simmons (1983) reported on three dimensions of QoL of donors: physical, emotional, and social well-being. In their 5-9 year follow-up, donors (n= 135) reported positive attitudes and little regret. If donation was unsuccessful (n=50), 18% (versus 5% of donors who were successful) reported difficulty in the relationship and feeling less close to the recipient. Self-image mean scores were higher after donation than before. Donors had higher self-image scores than nondonors; scores were also higher than prior to donation, reflecting that donation may have helped their selfimage. They scored more favorably on depressive affect than normal controls. Donors were significantly more likely than nondonors from the family to report a close relationship with the recipient. QoL can be viewed from the perspective of the donor and from its impact on others (Elliott, 1995). Goodinson and Singleton (1989) recommend that QoL be measured at various times during the donor process. This research provides a measure of the donor’s QoL after donation – for at least one donor it was 25 years after donation. Although these donors have not been monitored longitudinally, the difference in scores for those who donated prior to 1990 compared to those after 1990 justify more study of living kidney donors. The Ladder of Life scores for the donors in the current study were considerably higher than the U.S. population (past=5.2; present=6.3; future=7.9) (Cantril, 1965). The kidney donor findings on the present and future ratings are similar to a sample of a visually handicapped group, that is, a high rating for the


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present, but a higher rating of QoL in the future (Roessler, 1978). The difference may be attributed to the length of time since these comparative data were published. Overall, the donors rated their QoL at a moderately high level on this measure. The relatively low correlation with Ferrans and Powers Quality of Life scale may reflect the impact of different domains, since the Cantril scale is a single measure. The high percentage with high social desirability scores may reflect Russell and Jacob’s (1993) concern that living donors are motivated by what they think others expect them to do. Social desirability is a fairly enduring characteristic. This finding should alert those seeking living donors that these individuals may feel less free to refuse to donate a kidney. Recently, Elliott (1995) has raised the issue of the effect on the living donor of health care personnel allowing a donation as distinguished from encouraging it. He also noted the reservations of some doctors to use living donors and the importance of anticipating the harm to others than the donor from making an organ donation. These issues were the impetus for one transplant surgeon to stop using living donors (Starzl, 1992 ) . Because these data were collected after kidney donation, we do not know what their scores were prior to donation. Using a longer version of the Marlowe-Crowne Social Desirability scale, Vella-Brodrick and White (1997) reported that none of their normal subjects scored above the midpoint, a finding also reported by Spirrison, Schneider, Hartwell, Carmack, and D’Reaux (1997) for an American student sample. The findings may not be directly comparable because of the different lengths of the scales used, but having more than half of the kidney donors score above the midpoint may reflect differences in these two groups as well as national variations. Limitations. This research was limited by the wide span of time since donation, the sample size, and the inability to contact more of the living donors affiliated with this program. Factors other than donation can contribute to QoL (e.g., birth of a baby, marriage) and these were not


assessed. Measures before and after donation and also assessing life stress events that may also affect QoL can provide more valid results about the impact of being a donor.

Implications for Nursing Nursing has always had a strong commitment to patient education and for the advocacy of patient’s rights. These concerns should also guide transplant nurses, who serve as transplant coordinators and recruit living donors. It is the role of nurses to continue to do so. Most patients were happy with their decision to donate a kidney and felt that they were well prepared for the surgery, recovered without complications, and returned to their former state of health. This information is helpful to patients considering kidney donation because most of them wonder how they will feel physically after donation. Donors should be provided with the results of laboratory tests performed after the transplant to verify that they have adequate kidney function, since a few were worried about their health in this research. Even though most patients have usually made a decision before they come to the transplant clinic, it is the role of the nurse to determine that the patient has made an informed decision and that the decision is made free of coercion. For some of the donors in this research, making the decision to become a living donor was difficult. Nurses should encourage the donor to express the doubts and the issues that are cause for concern. Since the study does suggest that male donors experience more ambivalent feelings, the nurse needs to bear in mind that the male donor may need more clarification of his choices and his feelings. Donors may express the opinion that they are giving up a lot for nothing in return. Kidney donors need to be adequately educated and provided with emotional support in making this difficult decision. They need to know that the nurse is available to them when needed and that all discussions between them are held in confidence. Everyone wants a good outcome for the kidney transplant donor and the kidney recipient. Nurses must provide the patient with adequate information to make a decision, provide

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an opportunity to discuss the decision to donate, and serve as a liaison to the health care organization in the years after the donation. Nurses play a key role in recruiting living donors; therefore, it is imperative that they understand the difference between voluntary donation and subtle coercion in this important decision. References Atkinson, R. (1982). The stability and validity of quality of life measures. Social Indicator Research, 10, 113-132 . Bernstein, D., & Simmons, R. (1974). The adolescent kidney donor: The right to give. American Journal of Psychiatry, 131, 1338-1343. Bia, M., Ramos, E., Danovitch, G., Gaston, R., Harmon, W., Leichtman, A., Lundin, P., Neylan, J., & Kasiske, B. (1995). Evaluation of living renal donors. Transplantation, 60, 322-327. Brown, J.S., Rawlinson, M.E., & Hilles, N.C. (1981). Life satisfaction and chronic disease: exploration of a theoretical model. Medical Care, 19, 1136 - 1146 . Butterworth, V.A., Simmons, R.G., & Schimmel, M. (1992-93). When altruism fails: Reactions of unrelated bone marrow donors when the recipient dies. Omega: Journal of Death & Dying, 26, 161-173. Cantril, H. (1965). The pattern of human c o n c e r n s. New Brunswick, NJ: Rutgers. Cerilli, G.J. (1988). Organ transplant and re p l a c e m e n t.Philadelphia: Lippincott. Crowne, D.P., & Marlowe, D. L. (1964 ) . The approval motive. New York: Wiley. Eisendrath, R., Guttman, R., & Murray, J. (1969). Psychologic considerations in the selection of kidney transplant donors. Surgery, Gynecology & Obstetrics, 129, 243 - 248 . Elliott, C. (1995). Doing harm: Living organ donors, clinical research and the tenth man. Journal of Medical Ethics, 21, 91 - 96 . Farquhar, M. (1995). Definitions of quality of life: A taxonomy. Journal of Advanced Nursing, 22, 502 - 508 . Fellner, C.H., & Marshall, J.R. (1968 ) . Twelve kidney donors. JAMA, 20 5 , 89 - 90. Fellner, C.H., & Marshall, J.R. (1970). Kidney donors – the myth of informed consent. American Journal of Psychiatry, 126, 1245 - 1251. Ferrans, C.E., & Powers, M.J. (1985 ) . Quality of life index: Development and psychometric properties. Advances in Nursing Science, 8(1), 1524 . Ferrans, C.E., & Powers, M.J. (1992 ) .

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Psychometric assessment of the quality of life index. Research in Nursing and Health, 15, 29 - 38. Goodinson, S.M., & Singleton, J. (1989 ) . Quality of life: A critical review of current concepts, measures and their clinical implications. International Journal of Nursing Studies, 26, 327-341. Gouge, F., Moore, B., Bremer, C., McCauley, C., & Johnson, J. (1990 ) . The quality of life donors, potential donors, and recipients of living-related donor renal transplantation. Transplantation Proceedings, 22, 2409 2413. Hilton, B., & Starzomski, R.L. (1994 ) . Family decision making about living related kidney donation. ANNA Journal, 21, 346 - 354, 381. Holzemer, W.L., & Wilson, H.S. (1995 ) . Quality of life and the spectrum of HIV infection. Annual Review of Nursing Research, 13, 3 - 29 . Jalowiec, A. (1990). Issues in using multiple measures of quality of life. Seminars in Oncology Nursing, 6, 271277. Johnson, C., Wi cks, M., Milstead, J., Hartwig, M., & Hathaway, D. (1998 ) . Racial and gender differences in quality of life following kidney transplantation. Image: Journal of Nursing Scholarship, 30, 125 - 130 . Jones, J., Payne, W.D., & Matas, A.J. (1993). The living donor – Risks, benefits, and related concerns. Transplant Review, 7, 115-128 . Kramer, M. (1995). Living related donation in lung transplantation. Archives of Internal Medicine, 155, 1734 - 1738 . M c Dowell, I., & Newell, C. (1987). Measuring health. New York: Oxford University. Morimoto, T., Yamaoka, Y., Tanaka, K., & Ozawa, K. (1993). Quality of life among donors of liver transplants to relatives. The New England Journal of Medicine, 329, 363 - 364 . Ottelin, C., Bueschen, A., Lloyd, L., Joseph, D., Diethelm, G., & Burns, J. (1994). Review of 333 living donor nephrectomies. Southern Medical Journal, 87, 61-64. Palmore, E., & Kivett, V. (1977). Change in life satisfaction: A longitudinal study of persons aged 46 -70. Journal of Gerontology, 32, 311-316. Palmore, E., & Luikart, C. (1972). Health and social factors related to life satisfaction. Journal of Health and Social Behavior, 13, 68 - 80. Polit, D., & Hungler, B. (1995). Nursing research – Principles and methods (5th ed.). Philadelphia: Lippincott Publications. Riehle, R., Steckler, R., Naslund, E., Riggio, R., Cheigh, J., & Stubenbord,

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W. (1990). Selection criteria for the evaluation of living related renal donors. The Journal of Urology, 144, 845 - 848. Roessler, R. (1978). An evaluation of personal achievement skills training with the visually handicapped. Rehabilitation Counseling Bulletin, 21, 30 0 - 305 . Russell, S., & Jacob, R. (1993). Livingrelated organ donation: The donor’s dilemma. Patient Education and Counseling, 21, 89 - 99. Simmons, R. (1983). Long-term reactions of renal recipients and donors. In N. Levy (Ed). Psychonephrology 2 (pp.275287). New York: Plenum Press. Simmons, R., Fulton, J., & Fulton, R. (1972). The prospective organ transplant donor: Problems and prospects of medical innovation. Omega: Journal of Death & Dying, 3, 319 - 339. Simmons, R., Hickey, K., Kjellstrand, C., & Simmons, R. (1971). Family tension in the search for a kidney donor. JAMA, 215, 909 - 912. Simmons, R., & Klein, S. (1972). Family noncommunication: The search for kidney donors. American Journal of Psychiatry, 129, 687- 692 . Simmons, R., Klein, S., & Simmons, R. (1977). Gift of life: The social and psy chological impact of organ transplanta t i o n. New York: John Wiley and So n s . Simmons, R., Klein, S., & Simmons, R. (1987). Gift of life. Piscataway, NJ: Transaction (Rutgers University). Simmons, R., Klein, S.D., & Thornton, K. (1973). The family member’s decision to be a kidney transplant donor. Journal of Comparative Family Studies, 4(1), 88 - 115. Simmons, R., Schimmel, M., & Butterworth, V. (1993). The selfimage of unrelated bone marrow donors. Journal of Health & Social Behavior, 34, 285 - 301. Simmons, R., Williams, S.L., Oler, J., & Jorkasky, D.K. (1986). Long-term renal function in kidney donors: A comparison of donors and their siblings. Annals of Internal Medicina, 105, 1. Spirrison, C., Schneider, I., Hartwell, J., Carmack, R., & D’Reaux, R. (1997). Early memories and maladjustment. Psychological Reports, 81, 227- 233 . Spital, A. (1989). Unconventional living kidney donors – attitudes and use among transplant centers. Transplantation, 48 , 243 - 248 . Spital, A. (1992). Unrelated living donors: Should they be used? Transplantation Proceedings, 24, 2215-2217 Spital, A. (1993). Living organ donation is still ethically acceptable. Archives of Internal Medicine, 153, 529 .

Starzl, T.E. (1992). The puzzle people. Pittsburgh: University of Pittsburgh Press. Strahan, R., & Gerbasi, K.C. (1972). Short, homogeneous versions of the Marlowe-Crowne social desirability scale. Journal of Clinical Psychology, 28, 191-193 . Terasaki, P., Cecka, J., Gjertson, D., & Takemoto, S. (1995). High survival rates of kidney transplants from spousal and living unrelated donors. The New England Journal of Medicine, 333, 333 - 336 . Tyden, D., & Blom, B. (1995). Livingdonor nephrectomy: How safe is it? Transplantation Proceedings, 27, 803 804 . United Network for Organ Sharing (UNOS). (1998a). Critical data. Available: http://www.unos.org/newsroom/critdata-main.htm United Network for Organ Sharing (UNOS). (1998b). Kidney transplants by center. Available: http://www. unos.org/data/centers/kivamc.htm Vella-Brodrick, D., & White, V. (1997). Response set of social desirability in relation to the mental, physical, and spiritual well-being scale. Psychological Reports, 81,127-130 . Wilson, W., Stickel, D., Hayes, C., & Harris, N. (1968). Psychiatric considerations of renal transplantation. Archives of Internal Medicine, 122, 502 506 . World Health Organization. (1991). Guiding principles on human organ transplantation. Lancet, 337, 14701471.


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