Analysis of the Motivation for Hematopoietic Stem Cell Donation

Analysis of the Motivation for Hematopoietic Stem Cell Donation M.T. Aurelio, A. Aniasi, S.E. Haworth, M.B. Colombo, T. Dimonopoli, M.C. Mocellin, F. Poli, R. Torelli, L. Crespiatico, M. Serafini, and M. Scalamogna ABSTRACT The Italian Bone Marrow Donor Register is the institutional organization for management of unrelated hematopoietic stem cell donors. The law requires only a donor’s clinical history, but not a psychosocial profile for registration. We have studied the donor’s motivation for enlistment on the donor registry and the medical staff’s need for this information to interact correctly with the donor. For this purpose we distributed a questionnaire to new donors at the 20 centers in the Lombardy Region over a period of 1 year. The analysis of the responses revealed a prevalence of extrinsic motivations that would not ensure continued registration for donation. Therefore, it is necessary that the donor be well informed and better educated about all aspects of donation, in order to produce a shift to an intrinsic motivation. This objective can be facilitated via professional training of health workers in communication. HE ITALIAN BONE MARROW DONOR REGISTER (IBMDR) with head office in Genoa coordinates 18 Regional Registers, which in turn coordinate 99 donor centers. At the end of December 2006, there were 320,709 unrelated donors registered nationally. In 2006, the IBMDR enrolled 8921 and dismissed 7462 donors. Considering the high donor dropout rate in recent years, we thought it would be important to analyze the probability of a donor’s choice to renew volunteer status. Through a questionnaire distributed in the 20 donor centers, we sought to classify donor motivation at the time of registration. The consensus was that the donor’s motivation is defined by two main stimuli: intrinsic motivation (primary), an interior stimulus that involves commitment to success in a satisfying activity, versus extrinsic motivation (secondary), controlled from an external pressure and/or incentive, so that the person acts automatically without a deep conviction. If extrinsic motivation is strengthened, it can shift to an intrinsic one, otherwise it can turn into demotivation.1 Even if a strong primary motivation is in place, it is fundamental that the potential donor receives the help and support of the medical staff at every point of the interaction throughout the donation process. Some authors have studied the motivation for donation at various steps. An American study linked extrinsic motivation with ambivalent feelings at the point of registration.2 Other studies investigated altruistic motivation, correlating it with the potential donor’s background characteristics and the psychosocial processes involved in the decision for registra-

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© 2011 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710 Transplantation Proceedings, 43, 981–984 (2011)

tion.3 This group also concluded that various psychosocial processes affect the incentive and that there is a lower level of ambivalence when the stimulus is based on empathy and a better reaction after the donation, if the previous feelings were positive. Another study pointed out that the communicated grade of risk to the donor (from high to low) influenced the availability of the apheresis donor.4 The high or low probability to actually be called for a donation and the grade of responsibility, that is, belonging to a large or small potential donor group for a certain patient, showed no relevance, however. Considering the few studies on the motivation behind the decision to adhere to the donation program, we sought to investigate the role of the medical staff in relation to the hematopoietic stem cell (HSC) donor’s perception of the meetings at the donor centers. MATERIALS AND METHODS A collaborative group of psychologists, hematologists, and biologists of the Regional Register designed a questionnaire that sought to correlate with theoretical principles of research into social From the Organ and Tissue Transplantation Immunology (M.T.A., A.A., S.E.H., M.B.C., T.D., F.P., R.T., L.C., M.S., M.S.); Immunohematology and Blood Service (M.C.M.), Department of Regenerative Medicine, Fondazione Cà Granda Ospedale Maggiore Policlinico, Milan, Italy. Address reprint requests to Dr M. Teresa Aurelio, Department of Regenerative Medicine, Organ and Tissue Transplantation Immunology, Fondazione Cà Granda, Ospedale Maggiore Policlinico, Milan, Italy. E-mail: [email protected] 0041-1345/–see front matter doi:10.1016/j.transproceed.2011.01.128 981

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motivation.5 We offered the optional, self-administered questionnaires to newly registered subjects who gave their signed consent and were identified only by a code number to ensure anonymity. We collected completed questionnaires from 82 new donors at the 20 donor centers of the region seeking primarily to test the approach in a pilot phase before enrolling a further 293 individuals. We divided the close-ended and open-ended questionnaires into two sections: the first for collection of personal and social status data and the second with multiple-choice questions. These questions regarded “the channel of information,” “the perception of the medical staff’s clarity and welcome,” and “the motivation for donor registration.” The questionnaire examined the donor’s subjectivity, experience, and perception of the reality of the situation. To understand the potential donor’s motivation, the questions related to the reasons for the decision to enlist, the time elapsed from the choice of registration, and the decision to donate as well as reactions to the possibility of unsuitability for donation. We collected the answers in a database for a descriptive analysis. The average age of the donors was 27.7 years with 71 subjects under 23 (24.2%), 66 subjects 24 to 27 (22.5%), 74 subjects 28 to 31 (25.3%), and 82 subjects ⱖ32 years old (28.0%). Table 1 describes the personal data and the social status of the subjects.

Statistical Analysis We used the ␹2 Pearson test to correlate the studied variables. Values of P ⬍ .05 were considered significant. We tested for Table 1. Personal Data and Social Status Gender Male Female Marital status Single Married/cohabiting Separated/divorced Not known Educational qualification Middle school High school Degree Not known Employment Professional Employee Housewife Student Other Not known Health worker Yes No Not known Blood donor Yes No Not known Enrolling as blood donor Yes No Not known

48.5% 51.5% 61.8% 36.8% 0.7% 0.7% 15.3% 56.0% 28.0% 0.7% 14.4% 53.3% 2.4% 23.2% 3.4% 3.4% 9.9% 89.4% 0.7% 53.3% 45.7% 1.0% 46.3% 50.7% 3.0%

associations between the variables of gender, age, type of employment, and motivation for donation.

RESULTS Descriptive Analysis

A significant association was observed between positive feelings about donation and (1) male gender and (2) white-collar worker/student employment and prior study of the background information regarding the process. No significant association was noted between age and the other tested variables. Knowledge of the donation program was not acquired for the majority of the subjects by in depth study through medical channels, but rather through family members, friends, and acquaintances (41.3% of subjects). Only five subjects (1.7%) knew about the possibility of donation through family medical doctors. Eighty-nine donors (39.7%) had further investigated the subject of the donation through the mass media. Only seven (3.1%) subjects reported acquiring better information at a blood center; 119 (40.6%) considered their previous knowledge about the donation sufficient; 7 (2.4%), very good, 86 (29.3%), good; 48 (16.4%) quite good; 31 (10.6%), insufficient; and 2 (0.7%) did not respond to this query. The correlation between the kind of job and the previously acquired information was significant (P ⫽ .029). It was evident especially among white-collar workers and students. Two hundred and five subjects (69.9%) considered the meeting with the medical staff useful; 51 (17.4%), useless; and 37 (12.6%) did not express an opinion. With respect to the reasons for a positive perception of the meeting with the hospital staff, 97 subjects (47.3%) did not indicate anything. Otherwise, the more representative information was regarding the usefulness of the donation (n ⫽ 57; 27.8%) as well as the explanation of the procedures (n ⫽ 21; 10.2%) and the clearness (n ⫽ 20; 9.8%). Less representative was information about withdrawal and risks (n ⫽ 3, 1.5% each), the timing of the whole process of donation (n ⫽ 2, 0.9%), safety and ADMO (Associazione Donatori Midollo Osseo) (n ⫽ 1, 0.5% each). Among the donors who judged the meeting useless, 27 (52.9%) did not indicate the reasons; otherwise, 13 (25.5%) declared themselves to already be well-informed and not have gaps in knowledge. For eight subjects (15.7%), the given information was insufficient; otherwise, there was a lack of the requests for information by three donors (5.9%). We evaluated also the perception of the reception rooms: 153 subjects (52.2%) declared the reception area in the hospital quite comfortable and 92 subjects (31.4%), very comfortable. Only 11 donors (3.8%) found it to be not comfortable; 1 (0.3%), not comfortable; while 36 (12.3%) did not express any opinion. The motivation for registration for donation was shown to be of an extrinsic nature. We evaluated also the time elapsed (time of latency) between the intention and the act of registration and the expected benefits of donation for the donor (Table 2). Table 3 includes data summarizing the previous experience of donation for the donors in this study. The data

MOTIVATION FOR HSC DONATION

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Table 2. Motivation for Time to Registration, Time of Latency, and Expected Benefits of Donation Motivationa

Help to patients (67.8%) Blood donor (7.8%) Nobleness of the act (4.6%) Personal comfort (3.9%) Religious beliefs (1.2%) Otherb (12.3%) Not Known (2.4%)

Time of Latency

ⱕ6 mo (55.6%) 6–12 mo (10.2%) ⱖ12 mo (24.6%)

Benefits

Yesc (40.3%) No (57.0%) Not known (2.7%)

Not remembered (9.6%)

Table 4. Methods for Controlling Fears Regarding Donation Fear of Donation

Yes (32.8%) No (65.9%) Not known (1.3%)

Method for Control of Fear

By personal conviction (39.6%) By the information provided for/researched by donor (9.4%) By the help of the clinical personnel (8.3%) By self-control (8.3%) By not thinking about donation (5.3%) By using their faith (1.0%) Not known (28.1%)

a

Thirty-nine subjects gave more than one answer. “From a sense of duty/solidarity,” 43.9%; previous donation to a family member/friend, 39.0%; family loss, 4.9%; not known, 12.2%. c Psychic, 80.5%; psychophysical, 17.0%; not known, 2.5%. b

regarding the sharing of the decision to register with the family members were positive for 195 subjects (66.6%); otherwise for 69 subjects (23.5%) who did not discuss the problem, 24 (8.2%) who did not share the decision, and 5 (1.7%) who did not answer. Data following the analysis of fear of HSC harvest are shown in Table 4. With respect to the donor’s reactions to the possibility that donation would not be possible due to health problems, 163 (55.6%) subjects said that they would have regret for the patients and only 11 (3.7%) were worried for themselves, while 108 (36.9%) were worried for the patients and for themselves; 7 (2.4%) answered in another way and 4 (1.4%) did not respond to the question. The donor’s answers to the possibility that donation would not be possible due to donor/recipient tissue incompatibilities were as follows: 188 (64.2%) responded that they, however, had good intentions and willingness to donate; 84 (28.7%) understood that they did not satisfy tissue matching criteria, 10 (3.4%) thought that the patients no longer needed a transplant and 11 (3.7%) did not respond. When designing the study, we did not fix sampling criteria but the studied population was comparable to the overall population registered in the centers with respect to age and sex. DISCUSSION

Analysis of the results highlighted a correlation between the type of employment and a detailed study of the information relating to donation (P ⫽ .029). Probably social and economic stability make the individual able to consider more profound needs for themselves and to be more altruistic. However, the majority of the subjects, who studied in depth, still considered the talk with the health worker useful (69.9%). The information from the medical staff concerned

the utility and the steps to donation, but not the risks and details regarding the HSC harvest procedure. Perhaps the lack of feelings of fear among the potential donors was due to the incorrect or incomplete explanation of the possible risks related to the HSC donation. In fact, at the first step, health workers but not doctors meet with the donors. They cannot go deeply into clinical matters, as this is not their area of expertise. The correlation between gender and feelings of fear was significant (P ⫽ .017): it was greater among females (61.0%) than males (38.5%); 59 women declared to be afraid compared with 37 men, possibly because women have more involvement with the family. It must be underlined that about a half of the subjects, if unsuitable for donation because of health problems, were more concerned about the patients’ and to a lesser extent their own health. Potential donors would more readily accept their inability to meet the requested criteria if it was because of mismatches with the patient. The motivation appeared to be extrinsic supported by an altruistic stimulus toward the patients, so that it was much more connected with ambivalent feelings than an intrinsic motivation. Nearly half of the interviewees were not blood donors and half of them did not intend to register as such. Only 4% of the suitable population gives blood in the Lombardy Region. The remote possibility to be called for HSC donation is perceived to be less demanding than an actual, active blood donation. It is important to support the public, all of whom are potential donors, with an educational program. Students of age range 18 to 28 years and employees of age range 26 to 33 years are the ideal targets. Another relevant factor for long-term registration is the time elapsed from the intention to the action of registering. There was a correlation between the emotional instinct and the action without a reinforced motivation useful to maintain the donation decision. Intensity, persistence, and direction of the stimu-

Table 3. Previous Experience of Donation Process Within Family Group or Friends and Previous Experience of Donation to Unrelated Individuals Registration of Family Members/Friends

Donation of Family Members/Friends

Donation to Unrelated

Positive Experience

Yes (45.1%) No (53.9%) Not known (1.0%)

Yes (11.3%) No (87.4%) Not known (1.3%)

Yes (45.5%) No (33.3%) Not known (21.2%)

Yes (75.8%) No (9.1%) Not known (15.1%)

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lus depend on the emotional status: emotions are the key to action only when they fit purposes and interests. The results of our study agreed with those of Switzer et al2 and of Briggs et al4: the feelings of ambivalence for lack of an intrinsic predisposition were similar in the studied populations. As Maslow concluded, needs are not only driven from physiological stimuli but are connected with many of life’s aspects and abstract values. They can also depend on what other people expect of us and on what we expect of other people.6 The study of reasons for a certain behavior helps to understand the variety of individual motivations, which can be personal or be linked to social needs. Our study of motivational aims suggested that motivation has a fundamental importance; extrinsic or intrinsic motivation is the major component. The subject’s predominant motivation has an altruistic peculiarity. Therefore when it is extrinsic, with ambivalent feelings, it is easily changeable to demotivation. Our study indicated that the consciousness and identification of the role with the process, that is, the perception of oneself involved as a part of the whole team, are fundamental ingredients of the action of donation. It is possible to support the potential donor’s identification with the process by providing relevant information to the public—all potential donors—and good training in communication by health workers. The lack of a convenient alliance between the potential donor and the health worker, especially during the first steps of the

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process, causes many problems in the potential donor’s management. The consensus is that the health workers’ professional involvement is different at various points in the relationship with the potential donor. The emotive involvement plays a primary role and influences the relationship, particularly near the time of donation. There is a need to change this emotional fund and link resources to a potential professional because these relationships are not native but learned and continually developing. It is thus possible to learn the emotive and cognitive matters in these relationships in order to use them in a better way for good communication.

REFERENCES 1. Buck R: Human Motivation and Emotion. New York: Wiley: 1976 2. Switzer GE, Myaskovsky L, Goycoolea JM, et al: Factors associated with ambivalence about bone marrow donation among newly recruited unrelated potential donors. Transplantation 75: 1517, 2003 3. Switzer GE, Dew M, Butterworth V, et al: Understanding donors’ motivations: a study of unrelated bone marrow donors. Soc Sci Med 45:137, 1997 4. Briggs N, Piliavin J, Lorentzen D, et al: On willingness to be a bone marrow donor. Transfusion 26:324, 1986 5. Brown R: Social Psychology. New York: Free Press; 1965 6. Maslow AH: Motivation and personality. New York: Harper and Row; 1954