understanding donors' motivations: a study of unrelated bone marrow donors

11
Pergamon Pll: S0277-9536(96)00327-9 Soc. Sci. Med. Vol. 45, No. 1, pp. 137-147, 1997 © 1997 ElsevierScience Ltd All rights reserved. Printed in Great Britain 0277-9536/97 $17.00 + 0.00 UNDERSTANDING DONORS' MOTIVATIONS: A STUDY OF UNRELATED BONE MARROW DONORS GALEN E. SWITZER, ~'2. MARY AMANDA DEW, 2"3"4VICTORIA A. BUTTERWORTH, 2 ROBERTA G. SIMMONS 2'~ and MINDY SCHIMMEL 6 'Department of Medicine, 2Department of Psychiatry, 3Department of Psychology, 4Department of Epidemiology, ~Department of Sociology, University of Pittsburgh, Pittsburgh, U.S.A. and 6JDC-Brookdale Institute of Gerontology and Human Development, Jerusalem, Israel Abstract--Medical advances in bone marrow transplantation techniques and immunosuppressive medi- cations have dramatically increased the number of such transplants performed each year, and conse- quently, the demand for bone marrow from unrelated donors. Although physiological aspects of bone marrow donation have been thoroughly investigated, very few studies have examined psychosocial fac- tors that may impact individuals' donation decisions and outcomes. To examine one particular set of donor psychosocial issues, this study investigated motives for bone marrow donation among 343 unre- lated bone marrow donors who donated through the National Marrow Donor Program. Six distinct types of donor motives were identified from open-ended questionnaire responses. Donors most fre- quently reported motives reflecting some awareness of both the costs (to themselves) and potential ben- efits (to themselves and the recipient) of donation. A desire to act in accordance with social or religious precepts, expected positive feelings about donating, empathy for the recipient, and the simple desire to help another person were also commonly cited reasons for donating. Among a series of donor back- ground characteristics, donors' gender was the variable most strongly associated with motive type; women were most likely to cite expected positive feelings, empathy, and the desire to help someone. Central study findings indicated that donor motives predicted donors reactions to donation even after the effects of donor background characteristics (including gender) were controlled. Donors who reported exchange motives (weighing costs and benefits) and donors who reported simple (or idealized) helping motives experienced the donation as less positive in terms of higher predonation ambivalence and negative postdonation psychological reactions than did remaining donors. Donors who reported positive feeling and empathy motives had the most positive donation reactions in terms of lower ambivalence, and feeling like better persons postdonation. These findings add substantially to the body of work concerning medical volunteerism generally, and also have important practical implications for the recruitment and education of potential bone marrow donors. © 1997 Elsevier Science Ltd Key words--bone marrow donation, altruism INTRODUCTION Since the National Marrow Donor Registry was established nearly a decade ago, the number of indi- viduals who have volunteered to donate bone mar- row to unrelated strangers has grown exponentially. Each month, approximately 30000 persons join the National Marrow Donor Program (NMDP) which now numbers over 2 million (National Marrow Donor Program, 1996). Despite the fact that medi- cal innovations have elevated bone marrow trans- plantation from an experimental procedure to one that is routinely used for some blood-related dis- eases, and despite increased awareness and accep- tance of unrelated donation among members of the general public, few studies have systematically investigated psychosocial issues surrounding the decision to become a bone marrow donor. *Author for correspondence: 3811 O'Hara Street, Pittsburgh, PA 15213, U.S.A. Our ongoing interest in living organ donation in general--and bone marrow donation in particular (Butterworth et al., 1992; Butterworth et al., 1993; Simmons et al., 1993; Switzer et al., under review; Switzer et aL, in press: Switzer et al., in press; Switzer et al., 1996)--has led us in this current study to investigate one critical aspect of the donor decision process: donor motivation. Specifically, we set out to (a) describe the motives of unrelated bone marrow donors, (b) examine the association of donor background characteristics (e.g., sex, age, religion) with motives for donation, and (c) examine the relationship of predonation factors, including donor motives, to psychosocial and physical out- comes of the donation process. In many ways, bone marrow donation is similar to other types of medical volunteerism such as kid- ney and blood donation which have enjoyed more research attention, especially with regard to donor motivation. In the following section, we briefly dis- cuss motives for medical volunteerism in general 137

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Page 1: Understanding donors' motivations: A study of unrelated bone marrow donors

Pergamon

Pll: S0277-9536(96)00327-9

Soc. Sci. Med. Vol. 45, No. 1, pp. 137-147, 1997 © 1997 Elsevier Science Ltd

All rights reserved. Printed in Great Britain 0277-9536/97 $17.00 + 0.00

UNDERSTANDING DONORS' MOTIVATIONS: A STUDY OF UNRELATED BONE MARROW DONORS

G A L E N E. SWITZER, ~'2. M A R Y A M A N D A DEW, 2"3"4 V I C T O R I A A. B U T T E R W O R T H , 2 R O B E R T A G. S I M M O N S 2'~ and M I N D Y S C H I M M E L 6

'Department of Medicine, 2Department of Psychiatry, 3Department of Psychology, 4Department of Epidemiology, ~Department of Sociology, University of Pittsburgh, Pittsburgh, U.S.A. and

6JDC-Brookdale Institute of Gerontology and Human Development, Jerusalem, Israel

Abstract--Medical advances in bone marrow transplantation techniques and immunosuppressive medi- cations have dramatically increased the number of such transplants performed each year, and conse- quently, the demand for bone marrow from unrelated donors. Although physiological aspects of bone marrow donation have been thoroughly investigated, very few studies have examined psychosocial fac- tors that may impact individuals' donation decisions and outcomes. To examine one particular set of donor psychosocial issues, this study investigated motives for bone marrow donation among 343 unre- lated bone marrow donors who donated through the National Marrow Donor Program. Six distinct types of donor motives were identified from open-ended questionnaire responses. Donors most fre- quently reported motives reflecting some awareness of both the costs (to themselves) and potential ben- efits (to themselves and the recipient) of donation. A desire to act in accordance with social or religious precepts, expected positive feelings about donating, empathy for the recipient, and the simple desire to help another person were also commonly cited reasons for donating. Among a series of donor back- ground characteristics, donors' gender was the variable most strongly associated with motive type; women were most likely to cite expected positive feelings, empathy, and the desire to help someone. Central study findings indicated that donor motives predicted donors reactions to donation even after the effects of donor background characteristics (including gender) were controlled. Donors who reported exchange motives (weighing costs and benefits) and donors who reported simple (or idealized) helping motives experienced the donation as less positive in terms of higher predonation ambivalence and negative postdonation psychological reactions than did remaining donors. Donors who reported positive feeling and empathy motives had the most positive donation reactions in terms of lower ambivalence, and feeling like better persons postdonation. These findings add substantially to the body of work concerning medical volunteerism generally, and also have important practical implications for the recruitment and education of potential bone marrow donors. © 1997 Elsevier Science Ltd

Key words--bone marrow donation, altruism

INTRODUCTION

Since the National Marrow Donor Registry was

established nearly a decade ago, the number of indi-

viduals who have volunteered to donate bone mar-

row to unrelated strangers has grown exponentially.

Each month, approximately 30000 persons join the

National Marrow Donor Program (NMDP) which

now numbers over 2 million (National Marrow

Donor Program, 1996). Despite the fact that medi-

cal innovations have elevated bone marrow trans-

plantation from an experimental procedure to one

that is routinely used for some blood-related dis-

eases, and despite increased awareness and accep-

tance of unrelated donation among members of the

general public, few studies have systematically

investigated psychosocial issues surrounding the

decision to become a bone marrow donor.

*Author for correspondence: 3811 O'Hara Street, Pittsburgh, PA 15213, U.S.A.

Our ongoing interest in living organ donation in

genera l - -and bone marrow donation in particular

(Butterworth et al., 1992; Butterworth et al., 1993;

Simmons et al., 1993; Switzer et al., under review;

Switzer et aL, in press: Switzer et al., in press;

Switzer et al., 1996)--has led us in this current

study to investigate one critical aspect of the donor decision process: donor motivation. Specifically, we

set out to (a) describe the motives of unrelated bone marrow donors, (b) examine the association

of donor background characteristics (e.g., sex, age,

religion) with motives for donation, and (c) examine the relationship of predonation factors, including

donor motives, to psychosocial and physical out-

comes of the donation process.

In many ways, bone marrow donation is similar

to other types of medical volunteerism such as kid- ney and blood donation which have enjoyed more

research attention, especially with regard to donor motivation. In the following section, we briefly dis- cuss motives for medical volunteerism in general

137

Page 2: Understanding donors' motivations: A study of unrelated bone marrow donors

138 Galen E. Switzer et al.

before we move to more specifically consider bone marrow donation.

Medical volunteerism

The importance of investigating motivation in the context of organ and bone marrow donation often has been noted in reviews of the donation literature, although systematic attempts to assess motives have been rare (Andrykowski, 1994; Andrykowski, 1994). The frequent failure of researchers studying donor issues to empirically assess donor motives seems surprising given the demonstrated relation- ship of donor motives to donor outcomes in such settings. For example, research with blood donors has shown that donors' motivations are re la ted to longer-term donation and donor satisfaction (Callero and Piliavin, 1983; Callero et al., 1987; Piliavin, 1990; Piliavin and Callero, 1991). Although some outcomes such as long-term active participation may not be a central concern for cer- tain types of organ or tissue donation, understand- ing how donors' self-evaluations, evaluations of the donation process, and psychological and physical difficulty with donation may be affected by their reasons for donating seems critical.

Donors are likely to be motivated by a variety of intrinsic factors (e.g., acting in accordance with reli- gious convictions), and extrinsic factors (e.g., social pressures) that may operate simultaneously to inspire and/or dissuade the donor. Furthermore, it is probable that the particular combination of moti- vational forces differs depending on whether or not the donor is related to the recipient. Members of the medical profession and transplantation research- ers have assumed that family members or emotional partners are naturally motivated by the prospect of saving the life of a loved one. In contrast to this view of related donors' motivations, expressions of willingness to donate to a stranger have often been viewed as unusual or even as pathological (Fellner and Schwartz, 1971). In the early years of kidney transplantation, for example, individuals who con- tacted transplant centers and volunteered to donate a kidney to a stranger were regarded with distrust and suspicion by transplant physicians (Hamburger and Crosnier, 1968). However, in an investigation of public attitudes toward kidney donation, Fellner and Schwartz (1971) found that 54% of metropoli- tan residents expressed willingness to donate a kid- ney to an unrelated stranger. They concluded that attitudes toward unrelated organ donation were much more favorable than the medical community previously had anticipated.

*Newer medical procedures including stem cell donation that may eventually replace the traditional surgical procedure for harvesting bone marrow involve a pro- cedure that is almost identical to whole blood and apheresis donation.

The availability of cadaveric and living related organs--coupled with concerns that any system of unrelated living organ donation could be abused-- has restricted the number of unrelated solid organ transplants performed in the U.S. However, unre- lated donors do provide a substantial amount of bone marrow for transplantation (Silberman et al., 1994). Bone marrow donation bears similarities both to blood donation (in that it involves a less invasive medical procedure of a physical material that is easily regenerated)* and to solid organ do- nation (in that it involves surgery under general anesthesia to assist a specific patient). Blood donor motivations have been examined in detail by sev- eral researchers and are relevant to bone marrow donation because of similarities in the donation procedures and because bone marrow donors have often been recruited directly from blood donor lists.

The first studies of motivations for blood do- nation were conducted in the same decade as the first studies of motivations for kidney donation, and reached similar conclusions; altruistic/humani- tarian motives for donating were most commonly reported (Oswalt, 1977; Simmons et al., 1977; Simmons et al., 1987). A more recent study examin- ing temporal changes in blood donor motivation determined that first-time donors were often motiv- ated to donate by less altruistic forces such as exter- nal social pressures (e.g., obligations to a group), but that if donation continued, these donors devel- oped an internal "donor self-image" (Callero et al., 1987; Piliavin and Callero, 1991; Callero, 1985; Callero et al., 1987; Charng et al., 1988; Gardner and Cacioppo, 1995; Royse and Doochin, 1995). Increased commitment to blood donation and cor- responding changes in self-image are thus produced in small incremental steps as donation continues; in- dividuals begin to see themselves as "the kind of person who donates." A similar process of increas- ing commitment and changes in self-identity may be operating for bone marrow donors. Such donors are often recruited to the registry in conditions that may involve high levels of social pressure, but sub- sequently make a series of small incremental decisions leading to actual donation (Stroncek et aL, 1989).

Finally, there is some evidence that one's self- image as a "medical donor" may generalize across donation types. For example, studies of bone mar- row donor recruitment from blood donor registries have found that frequent blood donors are 3-12 times more likely to join the bone marrow registry than less frequent blood donors (Beatty et al., 1989; Briggs et al., 1986; Cacioppo and Gardner, 1993; Sarason et al., 1993).

Unrelated bone marrow donation

Unrelated bone marrow donors volunteer to engage in an act which is time consuming, painful,

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Donation motives 139

and frequently frightening, to help someone they have never met. Prospective donors who are part of the national registry are matched with individuals who need a bone marrow transplant (most often to treat leukemia, aplastic anemia, or some other form of cancer or blood disorder) but who can not ident- ify a related donor. Donors consent to undergo general or spinal anesthesia for 1-2 hours while bone marrow is aspirated from the illiac crest of the pelvis through small incisions in the donor's lower back. Following donation, donors may experience anesthesia--related side-effects such as sore throat, nausea, headaches, vomiting, or temporary numb- ness in the legs. Although long-term physical costs to donors are likely to be small because bone mar- row regenerates, donors often spend a day or two at home recovering and report feeling the lingering effects of donation for up to a few weeks.

Unrelated bone marrow donation is a particularly interesting form of medical volunteerism because it involves costs and benefits that are higher than those of blood donation, but potentially lower than those involved in the donation of nonregenerating organs (e.g., kidney, liver lobe, lung lobe) to a rela- tive. In addition to time missed from work and home activities, the inconvenience of rearranging one's schedule, and anxiety induced by the medical procedure, the costs of bone marrow donation include physical discomfort and the small possibility of severe life-threatening complications (estimated as about 1 in 400; [Bortin and Buckner, 1983]) or even anesthesia-related death (1 in 10000; [Hirsh, 1982]). The potential benefits include feeling that one has acted in accordance with deep emotional sentiments or moral convictions, and the very tangi- ble possibility of saving someone's life.

In the course of our discussions with bone. mar- row donors in previous studies, it became evident that different donors weighed the costs and benefits of donation in very different ways and, in many cases, seemed to be so strongly motivated to donate that they discounted any possible negative outcomes of the donation process altogether (Butterworth et al., 1993; Switzer et al., in press). We therefore became deeply interested in investigating donors' motives in a more systematic fashion, both to describe such motives and their demographic ante- cedents, and to determine whether motives pre- dicted psychosocial and physical reactions to the donation process. For the current study, we exam- ined these issues qualitatively--by creating a typol- ogy of the six types of non-mutually exclusive motives reported by this group of donors- -and quanti tat ively--by examining the relationships among donor background characteristics, donor motives, and donors' reactions to the donation ex- perience.

METHODS

Subjects and procedure

Potential subjects for this study were the 962 in- dividuals from the NMDP registry who donated bone marrow between December 1987 and December 1991 (see Butterworth et al., 1993 for a more complete description of donor recruitment procedures). Although a series of psychosocial ques- tionnaires was sent to all donors, participants for the current study included the cohort of 343 indi- viduals who donated marrow through the NMDP during this timeperiod and returned predonation, 1-2 week postdonation, and one year postdonation questionnaires. During the first few years of NMDP operation, virtually all donors were recruited through blood banks and thus were regular platelet or blood donors who volunteered to join the regis- try. Once a volunteer in the NMDP registry was identified through laboratory blood tests as the best potential match for a patient needing marrow, the volunteer attended an hour-long information ses- sion with donor center medical personnel. Before consenting to become a bone marrow donor, all po- tential donors were fully informed about the mar- row collection procedure, risks and benefits of bone marrow donation, and anesthesia options, and often viewed a videotape which described a related donor transplant. Shortly after giving final consent to bone marrow donation, donors received a predo- nation questionnaire including the measures described below. Follow-up questionnaires were mailed 1-2 weeks postdonation and 1 year postdo- nation.

Longitudinally, of the 849 predonation respon- dents, 716 (84%) subsequently returned the shortly postdonation questionnaire. Of these 716, 343 (48%) returned the one year postdonation ques- tionnaire producing a final panel of 343 donors who completed all three questionnaires. To deter- mine whether particular types of donors were likely to be excluded from our sample because of nonresponse to one of the study questionnaires, the 343 donors in our study cohort were compared to donors who returned predonation but not post- donation questionnaires. Chi-square analyses indi- cated that these two groups did not differ on any of the demographic characteristics measured predo- nation. In addition to gathering questionnaire data, we conducted one hour in-depth telephone interviews with every second donor of approxi- mately the first one hundred donors. Quotations from these 50 interviews are included below to il- lustrate the categories of motives developed from the full sample.

Measures

Three classes of variables were included in the present study. First, motives were coded from open- ended responses to the predonation questionnaire

Page 4: Understanding donors' motivations: A study of unrelated bone marrow donors

140 Galen E. Switzer et al.

item, "In your own words, what do you feel your reasons are for donating?" A typology was devel- oped inductively; as open-ended responses were reviewed they were collapsed into six distinct motive categories which were based on Simmons' prior work (Simmons et al., 1977). Research staff were trained to code up to four motives for each respon- dent based on the responses to the open-ended question. All responses were initially coded by one staff member and an additional twenty percent were subsequently coded by a second staff member. Agreement among the two ratings, corrected for chance, was measured using Cohen's Kappa. A kappa of .85 (p < .05) was achieved between the two raters, indicating a strong degree of interrater reliability. Over half (63%) of respondents reported more than one motive. The average number of mo- tives reported was 1.97 (sd = .96).

Second, donor background characteristics includ- ing gender, age, religion, marital status, whether the donor had any children, and educational level attained were collected from predonation question- naires. Because 99% of these donors were white, ethnicity was not included as a variable in these analyses.

Finally, reaction to the donation process was measured by a total of seven outcomes gathered in the three questionnaires (predonation: ambivalence; shortly postdonation: physical difficulty with do- nation, negative psychological reactions; 1 year postdonation: negative psychological reactions, self- esteem, feeling like a better person, concern about recipient). The one reaction to the donation process measure collected predonation was an additive seven-item ambivalence scale used previously with kidney donors (Simmons et al., 1977). (Cronbach's alpha for the present sample was .78). It was assumed that the formulation of donor motives temporally preceded donors' emotional responses (e.g., ambivalence) toward donation--thus, predo- nation ambivalence is conceptualized as a donation reaction potentially affected by motives. Ambivalence items assessed doubts and worries about donating (e.g., "I sometimes feel unsure about donating.") and commitment to donating (e.g. "I would really want to donate myself even if someone else could do it.") To be consistent with previous applications of this measure (Switzer et al., in press; Simmons et al., 1977), all items were dichotomized and an index of ambivalence was formed by summing the number of items checked by the respondent (0 = no items endorsed: not at all ambivalent, to 7 = all items endorsed: extremely ambivalent).

Physical difficulty with donation and negative psychological reactions to donation were measured on the 1-2 week postdonation ques- tionnaire. Physical difficulty with donation was measured with five items asking how the donor felt physically during and after the donation,

whether the process was more or less painful than the donor expected, how many days passed until the donor felt physically "back to normal," and whether the donor had experi- enced fatigue or lower back pain. These items were scored along 3-point scales (e.g., fatigue: 0 = n o t at all, 1 = a little, 2 = a lot; days until donor felt physically normal: 0-5, 6-14, >14 days). An overall physical difficulty scale was created by summing the 5 items [6]. Thus, scores ranged from 0 = no physical difficulty, to 10 = high physical difficulty with donation (Cronbach's alpha = .70).

Psychological reactions shortly postdonation (and also measured at one year postdonation) were measured with a four-item scale developed for use with kidney donors (Simmons et al., 1977), and modified slightly for use with bone marrow donors (Switzer et al., in press). Items asked whether donors felt like they had given something for nothing in return (0 = disagree a lot, 1 = disagree a little, 2 = agree a little, 3 = agree a lot; dichotomized for analysis as 0 versus all other categories), whether they were generally happy about having donated (0 = very happy about hav- ing donated, 1 = a little happy, 2 = a little unhappy, 3 = very unhappy about having donated; dichotomized as 0 versus all other cat- egories), how worried they were about the effects of marrow donation on their own body (0 = almost never, 1 = sometimes, 2 = often; dichotomized as 0 versus all other categories), and how worried they were about their own current health (0 = not at all, 1 = a little, 2 = somewhat, 3 = very; dichotomized as 0 versus all other cat- egories). Because the number of response cat- egories per item ranged from 3-4, and because the distribution of responses on each item was skewed, items were dichotomized as noted above (Switzer et al., in press; Simmons et al., 1977). The four items were summed to form a final scale ranging from 0 = no negative psychological reactions, to 4 = very negative psychological reactions. The in- ternal reliability coefficient for this scale (alpha = .44) is lower than the coefficient obtained in previous uses of the scale (alpha = .73; (Simmons et al., 1977). However, the four items were all positively intercorrelated (median r =.10), and excluding one or more items did not produce any improvement in reliability. The low coefficient probably reflects measurement error in large part, and suggests that statistics using this scale will underestimate the degree of relationship of donor motives to psychological reactions.

The four other measures of donor reaction to the donation process were measured one year postdona- tion. These included measures of negative psycho- logical reactions (discussed above), self-esteem, feelings that one is a better person as a result of the donation, and concern about the recipient. A nine-

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Donation motives 141

Table 1. Means and standard deviations for all donation reactions

Donation reaction Range Mean SD

Predonation Ambivalence 0-7 1.78 1.95

Shortly postdonation Physical difficulty 0-10 4.85 2.49 Psychological 0-4 1.55 .80

difficulty One year postdonation

Psychological 0-4 1.40 .62 difficulty

item scale measuring self-esteem was derived from the scale developed by Rosenberg* (Rosenberg and Simmons, 1972; Rosenberg, 1965), (Cronbach's alpha for this sample was .75). Donors responded to statements about themselves (e.g. "I feel I have a number of good qualities", "On the whole, I am satisfied with myself, . . . . I feel I do not have much to be proud of", "At times I think I am no good at all") using four response categories (1 = strongly agree, 2 = agree, 3 = disagree, and 4 = strongly disagree). To be consistent with previous appli- cations of the scale (Simmons et al., 1993; Switzer et al., in press; Simmons et al., 1977) responses were dichotomized (0 = low self-esteem, 1 = high self-esteem) and summed to form a composite scale ranging from 1 to 9.

The final three variables were adapted from Simmons' studies of kidney donors (Simmons et al., 1977). The ten-item "perception of oneself as a bet- ter person" measured the extent to which a donor felt like a better person due to the donation (Cronbach's alpha =.75). Items were questions about respondents' self-feelings when they thought about the transplant (e.g. "When you think about the transplant have you felt..." 1 = very proud, 2 = a little proud, 3 = not at all proud; "Donating bone marrow makes one feel that he/she is some- how a bigger and more worthwhile person. Do you..." 1 = agree a lot, 2 = agree a little, 3 = disagree a little, or 4 = disagree a lot). Items were dichotomized (0 = low "better person," 1 = high "better person") and summed to form a composite scale ranging from 0 to 10.

Donors' concern about the recipient at one year postdonation was measured with a single item. Donors were asked to respond to the statement, "I think about the recipient..." by checking one of nine frequencies ranging from, 1 = never to 9 = more often than once a day. Table 1 lists means and standard deviations for all donation reaction variables.

*Nine-item and eight-item versions of this scale have been extensively used and validated in previous work (e.g., Simmons et al., 1993; Simmons et aL, 1977; Rosenberg and Simmons, 1972). In such cases, the elimination of one or two items from the original ten-item scale has substantially improved the internal consistency of the composite measure.

RESULTS

Describing donor motives

Our motive typology included six types of mo- tives: empathy-related motives, exchange-related motives, normative motives, idealized helping mo- tives, positive feeling motives, and past experience- based motives. Each are defined below and are summarized. These motives are similar to those found among other types of volunteers, both in nat- uralistic settings--such as volunteer "buddies" for AIDS patients (Clary and Snyder, 1991; Snyder, 1993; Clary and Orenstein, 1991; Omoto and Snyder, 1990), 4-H volunteers (Rohs, 1986), social service volunteers (Rubin and Thorelli, 1984), elderly volunteers (Okun and Eisenberg, 1992), and kidney donors (Simmons et al., 1977; Simmons et al., 1987)--as well as in more controlled experimen- tal studies of helping (Batson et al., 1989; Baumann et al., 1981; Karylowski, 1982; Perry et al., 1986; Bar-Tal, 1982; Cialdini et al., 1987). Table 2 includes donor quotations from our in-depth inter- views and open-ended questionnaire responses illus- trating each motive category.

Exchange-related motives were the most com- monly reported type of motive; 45% of donors reported such motives. Motive descriptions were categorized as exchange-related if they stated or implied donors' awareness of the relative costs (to themselves) and benefits (to themselves or the mar- row recipient) of donating. Variations of exchange motives included statements indicating that donors were comparing their own good fortune with the bad fortune of the recipient and wanting to "give something back," and statements concerning the hope that should they or their family were in a similar desperate situation, others would do the same for them.

More than one-third of donors (37%) gave ideal- ized helping motive responses. These donors seem to have been responding "automatically" without deep thought about the potential costs of donation or even their own motivations to become volunteers. Approximately one-quarter (26%) of donors cited feeling that donating was their social obligation/ duty or that donating was morally correct or appro- priate (normative motives). In many cases, state- ments included in this category contained direct

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142 Galen E. Switzer et al.

Table 2. Six Donor Motivation Categories Illustrated with Donor Quotations

Exchange-related motives The main thing on the bone marrow, I think, (was) a the.., information they gave when I received the pamphlet. It gave the statistics on survival and how much it increased. I felt, oh boy, if I can do that (it's such a little thing on my part). I can't remember the exact statistics, but it increased from (about) 20% to 70%. My healthy marrow can prolong her life, I hope. That's the whole drive. I got something freely, and if I can give it back, let's do it. Idealized helping motives I feel fortunate that I am able to be a donor... I guess (I was) just glad to be able to help. (I wanted) to try to help somebody out, give somebody a chance for a normal life. Normative motives There was no doubt I wouldn't do it. It's something I feel I should do. I was brought up to help others whenever possible. Well, I guess being raised Catholic and being pro-life, it gives me a real good feeling to say I helped someone. Positive feeling motives The bottom line is here I can do something that's going to make me feel pretty good about myself. From the beginning I felt very privileged I could do this. Empathy-related motives I don't think I got emotional until they told me they notified her they had a donor. That's when 1 got emotional (thinking of them telling her). I was real excited for her.... The fact that she's close to my age makes me feel more emotional. ... (the donor coordinator) told me it was a little five-year-old boy. That decided me. I have a little five-year-old boy at home now. I keep looking at him and thinking, "What if it was my boy?" Past experience-based motives It's just the next step after giving pheresis. I started out giving blood, then pheresis, now this. If can help someone (I might as well). I'm a science teacher and I had read about children with Combined Immunosuppression Syndrome and that really appealed.... I did it because it was medical.

aParenthetical words or phrases within quotes indicate that the words may not be precisely those used by the respondent, although they are quite close. Such slight inaccuracies are the inevitable result of verbatim documentation of interviews which were not tape recorded.

references to religious tenets concerning helping others. A n o t h e r quar te r (25%) of donors discussed

the dona t i on in terms of the good feeling it gave them to per form this helping act (positive feeling motives). These positive feelings often included the

expectat ion tha t the d o n o r would have improved self-esteem or feel bet ter abou t h im/herse l f after donat ing. Donor s also repor ted feeling special or

privileged to be able to donate , especially when they were the only person whose mar row matched tha t of the recipient. Approximate ly one-fifth of

donors (18%) described their mot iva t ions to give bone mar row in terms of their feelings toward the recipient (empathy-related motives). Donor s seemed to be put t ing themselves in the place of the person who needed bone m a r r o w or tha t donor ' s family.

Empa thy seemed to be triggered by a variety of

stimuli including similarities between the d o n o r and the recipient, similarities between the recipient and

someone close to the donor , or simply seeing some- one else who was ill.

Finally, smaller numbers of donors reported past experience-based motives (8%) which included state- ments abou t the donor ' s previous life experiences such as par t ic ipat ion as a b lood or apheresis donor , o ther background as a volunteer, or experiences tha t made the d o n o r especially aware of the need for bone marrow. An addi t ional 9% of motives did not seem to fit any of the above categories. The mos t c o m m o n theme a m o n g these remaining mo- tives were s ta tements tha t did not so much give reasons for their decision as express incredulity tha t anyone would decide otherwise. Because the pro- por t ion of donors repor t ing past experience-based motives, or motives tha t did not fit any of the pre- established categories was relatively small, sub- sequent analyses focused on only the five mos t

c o m m o n motive types and did not include motives f rom these two categories.

In tercorre la t ions a m o n g the motive types were in- itially calculated to determine, in part , whether our a priori motive categories were in fact distinct mo- tive types. Low intercorrelat ions among motive cat- egories would bols ter our claim tha t we are measur ing a well-defined heterogeneous set of reasons for donat ing. We did find tha t motives were not highly intercorrelated; the only statistically re- liable relat ionships were between exchange and idealized helping motives (r = - . 1 4 ; p < .01), nor- mat ive and idealized helping motives (r = - .21; p < .01), and normat ive and empa thy motives (r = - . 1 6 ; p < .01). The correlat ion coefficients are all relatively small and negative indicating tha t endorsement of one of these motive pairs slightly decreases the l ikelihood tha t the other motive of the pair will also be endorsed.

Association o f background characteristics with mo- tives

Two-thirds of the sample were men (66%). More than ha l f (65%) of the donors were current ly mar- ried and had at least one child (64%). More than 99% were high school graduates and 52% had com- pleted some college. Donor s ' age ranged from 22 to 55 years (X = 38, sd =7.6) . For ty- three percent were Protestant , 35% were Catholic, 3% were Jewish, and 19% did not consider themselves par t of those religions.

Chi-square analyses were conducted in order to determine whether d o n o r background character- istics were associated with specific dona t ion mo- tives. W o m e n were significantly more likely to report empa thy and posi t ive feeling motives and somewhat more likely to repor t idealized helping motives than were male donors. Twenty- three per-

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Donation motives 143

cent of females compared to 13% of males reported empathy motives (Z2(1, n = 342) = 5.02, p < .05) and 31% of females compared to 21% of males reported positive feeling motives (~2(1, n = 342) = 3.83, p < .05). In addition, younger donors were more likely to base their reasons for donating on exchange-related motives and idealized helping motives than were older donors. Forty-eight percent of younger donors (those under 40) reported exchange motives, while 38% of older donors reported exchange motives (X2(I, n = 343) = 3.66, p = .056) and 41% of younger donors compared to 31% of older donors reported idealized helping motives (;(2(1, n = 343)= 3.67, p = .055). Finally, Protestants (30%) were slightly more likely than members of other religious groups (22%) to report normative motives for donating (Z2(1, n = 343) = 2.91, p = .088). Other than these associations no other background characteristics were associated with specific motives for donating.

Association o f background characteristics and mo- tives with donation reactions

A series of hierarchical multiple regression analy- ses was conducted to assess the relationship of background characteristics and the 5 most com- monly reported predonation motives to psychoso- cial and physical reactions to the donation process (see Table 3). Seven such regression equations were constructed. For each equation, a single outcome variable (ambivalence, physical difficulty with do- nation, shortly postdonation negative psychological reactions, one year postdonation negative psycho- logical reactions, self-esteem, better person, and concern about recipient) served as the dependent variable. Predictor variables were entered in two blocks: background variables (gender, age, religion, education level, marital status, and presence of chil- dren) were entered in the first block; motives (exchange, idealized helping, normative, positive

feeling, empathy) were entered in the second block. Variables were entered in separate, hierarchical blocks because, temporally, donors' background characteristics were likely to have preceded develop- ment of their motives for donation, and because our goal was to assess the effect of donation mo- tives on outcomes while controlling for the effects of donor background characteristics (Cialdini et al., 1987).

The linear combination of donor background characteristics and motives produced statistically significant (or nearly significant in the case of Physical Difficulty and Psychological Difficulty 1 year postdonation) R-values for the full equation for all outcomes except donor self-esteem. Ambivalence toward donation was predicted by gender and education level; female donors and donors who were more highly educated were more likely to experience higher levels of predonation ambivalence. Even after the effects of background characteristics were taken into account, exchange- related and positive feeling motives were related to ambivalence. Donors who seemed to be weighing the costs and benefits of donating were more likely to experience predonation ambivalence while those who were motivated by the expectation of positive feelings for themselves as a result of donation were less likely to be ambivalent.

Of the two outcomes measured shortly postdona- tion, psychological difficulty with donation was most strongly related to predonation background factors and motives. The only factor that signifi- cantly predicted physical difficulty with donation was gender; women were much more likely to report experiencing physical side-effects of donation than were men. Psychological difficulty, in contrast, was predicted by age (younger donors were more likely to report psychological difficulty than were older donors), and by marital status (married donors experienced greater psychological difficulty

Table 3. Relationship of Background Characteristics and Motives to Donation Reactions a

Ambivalence Physical Psych. difficulty Psych. difficulty Self-esteem Better person Concern about toward donation difficulty shortly post 1 yr. post recipient

Background Gender .14" .24*** .01 .07 .03 -.20** .03 Age - .04 - .07 - . 16* - . 14* - .06 - .03 - .04 Religion - .03 - .01 - .01 .05 .03 .13" .06 Education .21"* .01 - .07 .03 .06 - ,04 - .09 Married - .06 .05 .19* - .05 .11 - .02 - .04 Children - .03 - .07 - .04 .03 - .09 - .04 - .01

Motives Exchange .13* - .04 ,08 .03 - .03 .02 - .08 Ideal help .11 .03 .18"* .14" - .04 .04 - .06 Normative - .08 - .02 - .05 .01 .07 - .09 .03 Pos. feeling - . 18"* - .07 - .06 - .04 - .02 .14" .11 # Empathy .05 .03 - .01 - . I 1 # - .02 .12* .22** *

Adjusted R .30*** .18# .29*** .16 # .13 .24** .22*

a Numbers in the Table are standardized regression coefficients (beta values). #p < =.10. *p < =.05. **p < =.01. ***p < =.001.

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144 Galen E. Switzer et al.

than did unmarried donors). In addition, donors who reported idealized helping motives were signifi- cantly more likely to experience shortly postdona- tion psychological difficulty than were their counterparts who did not endorse such motives.

A pattern of results similar to that for shortly postdonation psychological difficulty was found for one year postdonation psychological difficulty. Older donors and donors reporting idealized help- ing motives again experienced less psychological dif- ficulty than their counterparts. In addition, donors who were motivated to donate by empathetic feel- ings for the recipient were slightly less likely to ex- perience psychological difficulty at one year postdonation than were donors who did not report such motives.

The perception that one was a better person for having donated bone marrow was predicted by two background characteristics and two types of mo- tives. Men were significantly more likely to feel like better persons for having donated than were women and members of Protestant religions were more likely to feel like better persons than were donors with other religious affiliations. Donors who reported positive feeling and empathy motives were also more likely to feel like better persons for hav- ing donated than were donors who did not report such motives.

Finally, concern with the recipient was signifi- cantly predicted by empathy-related motives; those donors who were motivated to donate because they could understand what the recipient was feeling were more likely to be concerned about the reci- pient's well-being one year postdonation. In ad- dition, donors who reported positive feeling motives were somewhat more likely to be concerned about the recipient postdonation.

DISCUSSION

Donors who agree to undergo a surgical pro- cedure to donate bone marrow to a stranger engage in a unique and potentially life-threatening form of helping. The fact that the number of unrelated bone marrow transplants performed in the U.S. increases dramatically each year makes it critical to better understand the psychosocial processes involved in donors' decision-making. Although researchers have long been interested donor motives in the broader context of living medical donation (e.g., blood do- nation and kidney donation), motives for donating bone marrow have not been systematically exam- ined to date. Thus, we have undertaken an investi- gation of donor motives in a cohort of the first individuals to donate through the National Marrow Donor Program. In addition to describing such mo- tives, we have examined the relationship of donor background characteristics to motives, as well as the relationship of background characteristics and motives to a set of key donation reactions. Our cen-

tral goal was to determine whether donors' self- reported motives for donating predicted donors' reactions to the donation process even after back- ground characteristics were taken into account.

Although the majority of donors reported more than one motive, motives were not highly intercor- related. This indicates that particular groups of mo- tives were not consistently reported together, suggesting that a number of different psychosocial processes rather than a single motivation may guide this type of altruistic behavior. This interpretation is strengthened by our findings that different motive types were related to different sets of background and outcome variables.

The reasons donors gave for performing such an altruistic act varied widely. These reasons included weighing the risks and benefits of such an oper- ation, a simple desire to help, normative consider- ations, the positive feelings related to performing such an act, and feelings of empathy for the recipi- ent or the recipient's family. Motives were coded from an open-ended questionnaire item into a pr ior i

motive categories based on previous work with kid- ney donors (Simmons et al., 1977). Although inter- rater reliability for the presence or absence of each motive was excellent, this manner of assessing and coding donor motives is likely to have produced motive groupings that are somewhat less precise than those that would have been produced with closed-ended ordinal-level items. Ultimately, how- ever, allowing donors to describe motives in their own words may have yielded more valid responses than closed-ended items would have. In addition, the fact that several important and intuitively mean- ingful relationships of donor motives with donation reactions were found lends credence to the robust- ness of these motive categories; more precise measures could be expected to produce even stron- ger relationships.

There were surprisingly few reliable associations of donor background characteristics with donation motives. Perhaps the most interesting was that women were more likely than men to report donat- ing because of empathic feelings for the recipient, because they expected to feel good about donating, and for unspecified "idealized" helping reasons. These motives make sense in the context of the so- cietal norms for women, which encourage--and often impel-- them to be more nurturing and caring than men (Eagly, 1987; Eagly and Crowly, 1986; Parsons and Bales, 1955). The incorporation of these norms into women's daily roles may, in turn, lead women to help others for a variety of reasons that are consistent with such roles (e.g., empathy for someone in need), or for the possible outcomes of having fulfilled the role (e.g., feeling good for having helped someone else).

The most interesting and important findings in this study of donor motives resulted from the set of regression analyses concerning the relationship of

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Donation motives 145

donor background characteristics and motives with donation reactions. In general, men had more posi- tive donation experiences than did women; men had lower levels of predonation ambivalence, less physi- cal difficulty with donation, and felt like better per- sons following donation. This gender difference favoring men is one that is fairly consistently reported throughout the donation/transplantation literature (Switzer et al., in press; Piliavin and Cailero, 1991; Simmons et al., 1987), and may result from women's greater willingness to express less positive feelings or from an actual difference in the way that bone marrow donation is experienced by men and women. Two other groups--more edu- cated donors and younger donors--also reported less positive reactions in terms of greater predona- tion ambivalence or psychological difficulty one year postdonation.

Even after the effects of donor background characteristics were controlled, however, there were notable relationships of pre-donation motives to do- nation reactions. Two types of donors, those report- ing exchange-related motives and those reporting idealized helping motives, seemed to experience do- nation as less positive than donors who did not report such motives. First, donors who indicated that they had weighed the costs and benefits of donating were much more likely to experience pre- donation ambivalence than were other donors. Although such exchange-related motives were not directly associated with other less positive donation reactions, other investigations involving this same population indicate that predonation ambivalence is itself a central predictor of other negative postdona- tion outcomes (e.g., physical and psychological diffi- culty; Switzer et al., 1996). Thus, a cost-benefit analysis approach to donation may place donors directly or indirectly at risk for a variety of less positive donation outcomes. Second, donors report- ing idealized helping motives were also likely to have less positive experiences in the form of elev- ated psychological difficulty (e.g., feeling like they had given up something for nothing in return) both shortly postdonation and one year postdonation. It is possible that exchange-related motives and ideal- ized helping motives are actually two aspects of a single dimension--exchange donors seem to have heightened awareness of the potential costs of do- nation while idealized helping donors seem to be unaware of such costs. Differing levels of sensitivity to the potential underlying costs of donation would explain why exchange donors experience predona- tion ambivalence while idealized helping donors' negative reactions (psychological difficulty) are delayed until after the donation experience.

Two donation motives--positive feeling and empathy--were related to positive reactions to the donation process. Donors who said that they felt privileged to donate or that they expected to feel good about themselves after donation experienced

significantly lower levels of predonation ambiva- lence, elevated feelings of being a better person for having donated, and somewhat more concern about the recipient than donors who were not motivated by positive feelings. Although it is not necessarily clear that concern about the recipient is a positive reaction, the fact that this outcome is associated with other positive outcomes (both for positive feel- ing and empathy motives) indicates that it certainly is not causing donors to experience the full do- nation process less positively. As noted previously, the fact that positive feeling motives are associated with lower ambivalence is important because ambivalence may lead to a variety of other negative donation reactions. The link between positive feel- ing motives and feeling like a better person after donating is not surprising, and may represent, in part, a fulfillment of donors' expectations about the donation process. Donors with empathy motives had somewhat less psychological difficulty at one- year postdonation, felt like better persons for hav- ing donated, and were significantly more concerned about the recipient than were donors who did not report empathy motives.

Although expecting positive feelings for oneself and being concerned about the well-being of a reci- pient seem to represent two divergent motivational states--one focused internally on the potential ben- efits of donation to oneself and one focused exter- nally on the potential benefits to the recipient--they do share a common element. More than any of the other motive categories, these two motive types are affectively rather than cognitively based. Although the evidence presented here is preliminary, it is possible that donors who are emotionally engaged in the donation process may experience more posi- tive donation outcomes than those who donate for other reasons.

In sum, our findings demonstrate several things. First, it is clear that unrelated bone marrow donors agree to donate for a variety of reasons, none of which--in contrast to some of the earliest assump- tions about unrelated donors' motivations--seem particularly pathological. Second, specific motives for donation appear to be associated with donor background characteristics. This relationship seems especially strong for donors' gender, which was as- sociated with three of the five motive types central to our analysis. Finally, donors' motives are associ- ated with their reactions to donation; at least one motive type was associated with five of the seven donation reactions. Specifically, two motive types (exchange and idealized helping) were associated with less positive donation outcomes and two others (positive feeling and empathy) were associ- ated with more positive donation outcomes. The implications of these findings for the process of donor recruitment and education are important. If subsequent studies confirm the relationship of donor motivation to donation outcomes, donor

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146 Galen E, Switzer et al.

recruitment and continuing education strategies could be tailored to compensate for any liabilities invoked by certain motives, and to encourage donors to view the donat ion process more compre- hensively. Fo r example, if a donor coordinator informally assessed a donor ' s motives shortly before donat ion and discovered that the donor was focuss- ing narrowly on a process of weighing costs and benefits of donating (exchange motives), the donor coordinator could help the donor to broaden his/ her perspective to consider the potential good that could result f rom donating or on feelings of empa- thy for the recipient. We believe that the findings from the present study both enhance our conceptual and theoretical understanding of the process of medical volunteerism and further our ability to make practical suggestions for the recruitment and education of bone marrow donors.

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Acknowledgements--This work was supported by grant HL48883 from the National Heart, Lung, and Blood Institute, Bethesda, MD.

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