Assessment of psychosocial adjustment in Chinese unrelated ... - Nature

Bone Marrow Transplantation, (1999) 24, 903–910  1999 Stockton Press All rights reserved 0268–3369/99 $15.00 http://www.stockton-press.co.uk/bmt

Assessment of psychosocial adjustment in Chinese unrelated bone marrow donors A Molassiotis and E Holroyd Department of Nursing, Chinese University of Hong Kong, Hong Kong

Summary: This descriptive study assessed the experiences of unrelated bone marrow donation in 27 Chinese donors and compared their mood states with a random sample of 78 Chinese adult non-donors using four scales. The donors demonstrated better mood states in terms of angerhostility and fatigue compared to non-donors. However, their self-esteem was low (similarly to the non-donors), they did not see themselves as a better person as a result of the donation and they thought they did an act somewhat more generously than usual. This is possibly attributed to the cultural influences of normative obligation. The majority (57.9%) believed that they were not prepared well for the donation, and 40% found the experience emotionally less positive than they expected. Some found the experience physically stressful (10.5%) and some others were worried that their future health may be affected as a result of the donation (15.8%). Although a quarter of the donors was unsure whether they would donate again or whether they would encourage others to donate, the majority would donate again. Such results demonstrate that donors need careful and individualised attention in order to gain a more positive overall experience of the donation. Furthermore, services should be more vigilant in assessing donor needs and intervening when donors experience difficulties due to the donation process. Keywords: unrelated; bone marrow; donor; Chinese

Unrelated bone marrow donation is perhaps the last chance for patients who need bone marrow transplantation (BMT) but for whom a compatible family donor is not available. Bone marrow donation involves considerable dedication on the part of the donors, as bone marrow harvesting involves general anaesthesia, marrow aspiration from multiple bone cavities, considerable pain post-donation and the potential for serious complications,1 an experience that may be very traumatic for the donor. The experiences of bone marrow donors have attracted less attention in the literature compared to reports on psychosocial aspects of recipients’ experiences.2–5 This is surprising in the light of the frequent anecdotal reports of psychosocial problems in marrow Correspondence: Dr A Molassiotis, Department of Nursing, United College, Chinese University of Hong Kong, Shatin, NT, Hong Kong Received 20 October 1998; accepted 13 May 1999

donors, such as donor guilt and intense grieving.6,7 However, there is an increasing body of literature about the psychosocial issues of marrow donation, most of which derive from the USA. Despite the fact that marrow harvesting is intrinsically traumatic, only a few studies have examined the physical and psychosocial sequelae of marrow donation.8–12 Pain, often substantial, is frequently reported following marrow donation,13 yet only a single study has investigated postdonation pain in any detail.8 In this study, 30 adult related bone marrow donors provided daily reports of pain, analgesic use and analgesic side-effects until the donor discontinued use of pain medication. Pain medication was required for a mean of 3.3 days (range 1–13 days). Pain ratings indicated that many patients experienced moderate to marked pain despite the use of analgesics. However, 20 unrelated marrow donors in another study, interviewed 1– 36 days post-donation, reported no serious emotional or physical difficulties after donation.9 In fact, donors’ reactions were generally positive, with 95% indicating that they would donate again and 85% indicating that they would advise others to do so. Despite the general level of endorsement, a quarter of the sample stated that the experience was more negative than they had anticipated. However, no information was available regarding exactly how the experience differed from the expectation. Further, psychological adjustment and attitudes towards donation were assessed using questionnaires in 18 adult-related marrow donors.10 Although little emotional distress was reported, 10–20% of donors reported negative experiences or feelings (ie estrangement from the recipient) associated with their donation. It was also suggested that deterioration or death of the recipient might have an impact on donor psychological adjustment. Ambivalence about donating was reported by a substantial minority of an American sample together with physical difficulties with the donation and negative psychological reactions after donation.14 In the same study, ambivalence was the main predictor of post-donation reactions. Most positive reactions to donation have been observed in patients with less ambivalence predonation and feelings of being better persons post-donation whereas negative reactions have been seen in donors reporting exchange motives or simple helping motives.15 Physical problems were identified in another large sample of 493 unrelated donors, including tiredness post-donation (74.8%), pain at the puncture sites (67.8%) and low back pain (51.6%) as well as acute complications related to the procedure (5.9%) and one donor who suffered apnoea during anaesthesia.1 Mean

Psychosocial adjustment in Chinese unrelated BM donors A Molassiotis and E Holroyd

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recovery time was reported to be 15.8 days. Such physical problems together with longer collection times made the experience of marrow donation more stressful to some donors.11 Interviews conducted with 52 American marrow donors revealed that the donation helped the donors to actualise a central trait in their identity.12 Many donors in the sample believed that they were distinct from others in such traits as generosity and helpfulness. Identities energised by the marrow donation in some donors included a religious identity, a helping identity and desire to be a role model.12 Altruism is a common feature in the decision to donate bone marrow to strangers, deriving either from sociological (particularly normative obligation) or psychological mechanisms (ie empathy).16 Such altruistic behaviours may result in increased personal happiness and self-enhancement.16 No reports exist on the adjustment of Chinese individuals who have donated bone marrow to a stranger. Cultural values and beliefs may influence the decision to donate marrow and/or the psychosocial outcomes of the donation. In Hong Kong, the religious and moral philosophies of Buddism, Confucianism and ancestor worship are practised albeit by a minority (it is more likely, however, to see a combination of beliefs practised together). These may be contended to exert a subtle influence on the process of donation in the younger generation in modern Hong Kong. Buddism proposes the philosophy of rebirth in which the individual tries to achieve a higher birth status on each incarnation. Such a belief suggests that it is important to have all ones body intact at the time of death.17 Ancestor worship (memorialism of ones dead) is still practised in Hong Kong and while predominately continued by the elderly, the young are aware of the potential power the dead have to make a claim from the living, so unrelated donation may be a problematic concern. Further support for this belief was found in a recent study in which Chinese donors purported religious concerns associated with incomplete bodies.18 While this is more apparent in the older generation, the younger generation still carries remnants of this belief in that donation of marrow is associated with loss of blood which is implicit in a Chinese view of the life force.18 Confucianism, which is often equated with a sense of Chinese identity, is essentially a moral philosophy in which order and hierarchies of respect are fundamental. This involves dominant and subordinate configurations including the self, the family and the state. Stemming from the Confucian ideology is the popular belief that one inherits ones flesh and blood from the mother and ones bones from the father. These constitute ultimate gifts binding children into filial relationships, and they should not be interfered with; acts such as blood donation or invasive procedures constitute a violation of the sacredness of these gifts.19 Blood is seen to provide the energy or life force and as such should not be wasted, while the bones provide the link with family lineage important in promoting boundaries between insiders, such as family members and outsiders in the Chinese society. Although over time these beliefs are less visible in day to day practices, it is possible that they exist in different disguises in modern day Hong Kong. Bone marrow donation may be influenced by such cultural beliefs

and values, and their contribution to psychological wellbeing post-donation or attitudes and motivation towards marrow donation need to be explored in depth. The purpose of this study was to assess the psychosocial adjustment (self-esteem, anxiety and mood changes) of Chinese bone marrow donors post-donation. The research questions of the study were in relation to Chinese marrow donors: (1) Is there any long-term psychosocial morbidity associated with unrelated bone marrow donation? (2) Does psychosocial morbidity post-donation influence the unrelated donor’s willingness to donate in the future or advise someone else to donate? (3) What complications do bone marrow donors experience after donation? (4) How do donors differ in their psychosocial status from a sample of healthy individuals who have not donated bone marrow? Methods Ethical considerations Autonomy, confidentiality and protection of research subjects from emotional stress were guaranteed. Subjects participated in the study on a voluntary basis and they had the right to decline participation in the study without giving any reason. In order to maintain confidentiality, a member of the Hong Kong Marrow Match Foundation staff initially approached the donors. This approach took the form of a written and verbal detailed account of the project (in lay terms and in Chinese language) together with a statement of what is required of the donors. Donors were then invited to participate in the study and sign a consent form. Acknowledging the voluntary nature of the registry, confidentiality and privacy of the donors was of paramount importance. Ethical approval to conduct the study was obtained from the Research and Ethics Committee of the Faculty of Medicine, Chinese University of Hong Kong as well as from the Executive Committee of the Hong Kong Marrow Match Foundation. Study design An exploratory and correlational descriptive design was used in the study. Data were collected by means of questionnaires and in-depth interviews inquiring about the donors’ experiences, motivation and expectations from the donation. The total population of individuals who have donated marrow for an unrelated recipient through the Hong Kong Marrow Match Foundation was approached and their voluntary participation in the study was sought. Approaching all unrelated donors was essential for a relatively large sample size from which inferences can be made, taking into consideration that marrow donation in Hong Kong has only been established since 1992 with 69 donations to date. By necessity, convenience sampling was used. Instruments The Better Person Scale is a 10-item scale consisting predominantly of multiple choice questions for which respon-


dents are asked to check the box that most closely matches their feelings. It addresses the question whether a donor feels like a better person due to the donation.20 Higher scores indicate greater perception of one’s self as a better person. The reliability of the Better Person scale is high (a = 0.78–0.91), and face and construct validity have been reported.20 Eight descriptive items (‘Reactions to Donation’ questionnaire) further assess satisfaction with marrow donation, whether donors would be willing to donate again, how they felt about themselves after the donation, how stressful they perceived the donation to be, and how worried they are now about their health. The scale has been developed for use specifically with bone marrow donors.11 The Rosenberg Self-Esteem Scale is a 10-item scale that is structured using a Guttman procedure, which collapses items 1–3, 4–5, 9–10 and preserves the remaining. Internal consistency of the scale is high (a = 0.92) with good test– retest reliability (a = 0.85). Concurrent and predictive validity have been reported.21 Higher scores indicate higher self-esteem. The Profile of Mood States (POMS) is a widely used scale assessing mood. It is a 65-item adjective checklist with ratings on a 5-point Likert-type scale. There are six subscales, including tension–anxiety, depression, fatigue, anger–hostility, vigour–activity, and confusion. An overall score of mood states can also be calculated, with higher scores indicating more mood disturbance. Internal consistency has been reported to be high, with alphas higher than 0.87 in each subscale. Concurrent and predictive validity have been established.22 Data from healthy adults has also been collected. A translator fluent in Chinese and English translated these three questionnaires into Chinese. Validity of the translated questionnaires was achieved with back-translation to English by another translator fluent in Chinese and English (semantic equivalence), and discussion with a panel of experts (content validity). The fourth questionnaire used was the 20-item State Anxiety part of the 40-item State-Trait Anxiety Inventory (STAI),23 which is translated and validated in Chinese.24 State anxiety assesses temporal feelings of fear or worry or how people feel ‘right now’, as opposed to trait anxiety, which refers to the tendency of the individual to respond to stressful situations. The Chinese version of the STAI was correlated significantly with other Chinese measures of psychological well being, and convergent, discriminate and construct validity have also been reported.24 These scales were chosen as they are either wellvalidated scales in Chinese or they specifically assess the experiences of bone marrow donors. Further, these scales have been used in the past with other Western samples of marrow donors and they were able to provide comparative data between these and the present Chinese sample of donors. Procedures Two groups of individuals were approached. The first one included 78 healthy volunteers. Their responses could provide Chinese-specific normative data, leading to more meaningful comparisons with the bone marrow donor sam-

ple. The second one included the volunteers who donated their bone marrow to unrelated patients. After the initial contact by the donor centre staff, the research assistant approached these unrelated donors at a convenient place, the aims of the study were explained in detail and their voluntary participation was stressed. The four questionnaires used collected information on the personal feelings of the donor and the attitudes to donation, the reactions to donation, self-esteem, and mood states. The semi-structured interviews collected verbatim information about the reasons for donation and the donors’ experiences of the donation. Data analysis Descriptive statistics were used with all variables of the questionnaires. Spearman rho correlation coefficients were calculated between sociodemographic variables, donationrelated variables and the responses to the questionnaires. Cronbach alpha assessed reliability of the scales with the current samples. The chi-square test was used for comparisons between categorical data and the t-test for comparisons involving strong ordinal data. All analyses were carried out using the Statistical Package for Social Sciences (SPSS). Content analysis was used for the qualitative data.

Results Sociodemographic characteristics The sample included 27 bone marrow donors at a mean age of 30.9 years (s.d. = 7.05, range 21–53). From a total population of 69 bone marrow donors in Hong Kong since 1992, 28 could not be located due to immigration to another country or loss of contact. Four donors refused to participate in the study. The remaining 37 donors completed the in-depth interviews, but 10 of them did not complete the questionnaires due to excessive workload, leaving 27 evaluable sets of questionnaires. This represents a response rate for the quantitative part of the study of 66%. Most were females (59.3%) and single (59.3%). The majority had a low income by Hong Kong standards (Table 1). The mean time post donation was 3.2 years with a range from 6 months to 7 years. The outcome of the donation is not made known to the donors as part of the policy of the HK Marrow Match Foundation (however one donor did find out the outcome). The comparison group included a convenience sample of 78 individuals from the general public who had not donated bone marrow. Their mean age was 35.26 years (s.d. = 10.4). There were almost equal numbers of males (44.9%) and females (55.1%). 16.7% completed only primary education, 43.6% secondary education and 39.7% college or above education. Most were married (59%). The majority had a low income by Hong Kong standards (Table 1). A Goodness of Fit test showed that the two groups were matched in sociodemographic characteristics including income (P = 0.78), education (P = 0.23), mean age (P = 0.052), gender (P = 0.83), marital status (P = 0.07) and religious beliefs (P = 0.97). The groups, however, differed in their occupation (P ⬍ 0.001).

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Table 1 Sociodemographic characteristics of the individuals who donated bone marrow (n = 27) and those from the general public who did not (n = 78)

Age (in years) Mean (s.d.) Range Gender Males Females Marital status Single Married Divorced/separated Educational level Primary Secondary College and above Religious beliefs None Christianity Buddhism Monthly income (in HK $)a ⬍$20 000 $20–35 000 ⬎$35 000 Occupation Finance/business Students Professionals Engineers/technicians Labourers Retired Housewives Clerks Other a

Donors

Non-donors

30.9 (7.05) 21–53

35.26 (10.4) 18–63

n (%)

n (%)

11 (40.7) 16 (59.3)

35 (44.9) 43 (55.1)

16 (59.3) 9 (33.3) 2 (7.4)

28 (35.9) 46 (59) 4 (5.1)

– 15 (55.6) 12 (44.4)

13 (16.7) 34 (43.6) 31 (39.7)

18 (66.7) 8 (29.6) 1 (3.7)

53 (67.9) 20 (25.6) 5 (6.4)

17 (62.9) 8 (29.7) 2 (7.4)

54 (69.2) 13 (16.7) 9 (11.5)

12 1 5 4

10 17 10 9 13 1 5 10 2

(44.5) (3.7) (18.5) (14.8) — — — 2 (7.4) 3 (11.1)

(12.8) (21.8) (12.8) (11.5) (16.7) (1.3) (6.4) (12.8) (2.6)

1 US$ = 7.75 $HK.

Reliability of the scales As the scales were translated into Chinese and used in a different cultural context from previous applications, assessment of their psychometric properties was undertaken. Cronbach alpha coefficients were calculated as they provide a good estimate of reliability, since the major source of measurement error is because of the sampling of content.25 In the sample of non-donors the POMS achieved an alpha of 0.92 (a = 0.94 in the donor sample). Subscales also demonstrated high reliability ranging from 0.76 to 0.92. The State Anxiety scale of the STAI achieved an alpha of 0.92 for both groups. The Self-Esteem scale showed low internal consistency, with one item (item 5) decreasing the coefficient consistently in both samples. After deleting this item, the reliability coefficient for the donor sample was a = 0.67 and for the non-donors a = 0.43. The same procedure followed with the Better Person scale in order to increase its reliability with the current sample. After deleting item 3, the alpha coefficient increased to 0.68.

Psychosocial status Significantly less mood disturbance was observed in the donors compared to non-donors in relation to degree of anger–hostility (P = 0.008) and fatigue (P = 0.04). A trend was observed in that the donors appeared to be less depressed (P = 0.096) and have less overall mood disturbance (P = 0.088), but this trend did not reach a statistically significant level (Table 2). State anxiety and self-esteem showed no significant differences in the two groups. The Better Person scale (used only with the donors) showed that the donors did not see themselves as better persons as a result of the marrow donation (mean = 2.9, s.d. = 1.65, range, 0–6). The score from the Better Person scale was correlated with the self-esteem score (r = 0.50, P ⬍ 0.001). Looking into individual items of the scale it was more clearly demonstrated that the Chinese bone marrow donors did not feel particularly heroic, brave or proud persons for their donation. In addition, no donors felt that they had undertaken an exceptional sacrifice and a few believed it was a sacrifice somewhat out of the ordinary (15.4%). However, the majority thought that the donation was an act of generosity (Table 3). The majority (88.9%) considered bone marrow donation as a very worthwhile action. Further, reactions to donation were assessed with an 8item descriptive scale (Table 4). One in 10 (10.5%) found the donation quite a stressful experience. Only 15.8% of the donors felt well prepared for the donation and an additional 26.3% commented that they could have been better prepared. The majority did not think they were prepared adequately for this experience. However, despite these problems, most donors (78.9%) would donate again. They would also encourage other people to go through this experience. However, 5.3% of donors felt they would discourage someone as a result of their negative experience. We also asked the donors what physical problems they experienced after the donation. The main problem was pain, reported by 15 donors (55.5%). It took an average of 3 days to resolve, although in many cases painkillers were not used as it was only mild pain. One donor reported pain for 4 weeks after the donation and another donor mild pain up to a year after the donation. Other problems included fatigue/exhaustion (n = 5), vomiting (n = 4), difficulty walking (n = 2), dizziness (n = 2), infection at the puncture site (n = 1), and sore throat due to intubation (n = 1). One patient had a very negative experience from the donation Table 2 donors

Mean scores of the psychological status of donors and non-

Non-donor sample Mean (s.d.) Anger–Hostility Confusion Depression Fatigue Tension–Anxiety Vigour–Activity Mood disturbance State anxiety Self-esteem

13.97 9.37 15.35 8.8 12.8 18.08 41.6 47.45 2.8

(7.37) (4.17) (9.35) (5.16) (7) (4.7) (32.2) (2.52) (1.3)

Donor sample Mean (s.d.) 9.96 8 11.9 6.6 10.5 17.6 29.2 47.7 2.3

(6.08) (5.1) (8.9) (4.6) (5.8) (5.35) (30.9) (2.8) (1.25)

P value

0.008 ⬎0.1 0.096 0.04 ⬎0.1 ⬎0.1 0.088 ⬎0.1 ⬎0.1


Table 3

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Better Person Scale Items (n = 27) %

1. Do you somehow feel a better person for having donated your bone marrow? Yes* No 2. Donating bone marrow makes one feel like he/she is somehow a bigger and more worthwhile person. Do you . . . Agree a lot* Agree a little* Disagree a lot Disagree a little 3. A person willing to donate bone marrow is almost a hero. Do you . . . Agree a lot* Agree a little* Disagree a little Disagree a lot 4. Donating bone marrow was really sort of a high point in my life, making everything seem more meaningful. Do you . . . Agree a lot* Agree a little* Disagree a little Disagree a lot 5. When you think about the bone marrow transplant (for which you donated) have you felt . . . Very worthwhile* A little worthwhile Not at all worthwhile 6. Here is a list of the ways some people feel about those who donate BM. We’d like you to tell us which is the closest to the way you would describe an unrelated bone marrow donor. Anyone who donates bone marrow could be called a hero* A person who donates bone marrow makes an exceptional sacrifice* Anyone who donates bone marrow makes a sacrifice somewhat out of the ordinary It is generous to give bone marrow but anyone should do as much 7. Since the transplant, would you say you think . . . More highly of yourself* Less highly of yourself There is little change in the way you think of yourself 8. When you think about the bone marrow donation, have you felt . . . Very proud* A little proud Not at all proud 9. When you think about the bone marrow donation, have you felt . . . Very brave* A little brave Not at all brave 10. When you think about the bone marrow donation, have you felt . . . Very heroic* A little heroic* Not at all heroic

25.9 74.1 11.1 33.3 37 18.6 3.7 18.6 40.7 37 11.1 37 37 14.9 88.9 7.4 3.7 — — 15.4 84.6 7.4 3.7 88.9 7.4 63 29.6 11.1 66.7 22.2 3.7 48.15 48.15

Responses marked with asterisk get scored 1; the rest get scored as 0. Percentages are adjusted for missing values.

and she lost 9 kg of weight in the immediate period after the donation. Hospital stays ranged from 2 to 5 days. Correlations Psychosocial status in general was not associated with the reactions to marrow donation, with the exception of anger– hostility which was associated with worries about health as a result of the donation (rs = ⫺0.46, P ⬍ 0.05). Also, higher self-esteem was correlated with better preparation for the donation (rs = 0.55, P ⬍ 0.01). Younger age was associated with the decision to donate bone marrow again (rs = 0.54, P ⬍ 0.01). The stressful physical experience of the donation was correlated with worries about health (rs = 0.57, P ⬍ 0.001), education (rs = 0.54, P ⬍ 0.01), income (rs = 0.72, P ⬍ 0.001) and occupation (rs = 0.58, P ⬍ 0.001). Those donors who would donate bone marrow

again were more likely to encourage others to donate (rs = 0.70, P ⬍ 0.001). Finally, those that had worries about their health were less likely to encourage someone to donate bone marrow (rs = ⫺0.47, P ⬍ 0.05). Qualitative data The qualitative data drew interviews from a total population of 37 Chinese men and women on the donor registry who had donated bone marrow to an unrelated recipient (including the 27 that participated in the quantitative study). The 30 minute tape-recorded interviews involved a semistructured questionnaire guided by the quantitative analysis of the data and took place at the respondents’ workplace or home. The main themes identified by content analysis included specific beliefs about body fluids implying that ones fate is predetermined and should not be interfered


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Table 4

Reactions to bone marrow donation in Chinese donors %

쐌 In terms of the way you felt physically during and after the donation, would you say the donation was . . . Very stressful Quite stressful Not very stressful Not at all stressful 쐌 Would you say that, as a result of the marrow donation, you are . . . Very worried about your health now Somewhat worried A little worried Not at all worried about your health now 쐌 Did you feel well prepared for the donation experience? Yes, totally Yes, but could have been better No 쐌 Was the experience . . . More painful Less painful About what you expected 쐌 How was your experience different from your expectation? Was it . . . More emotionally positive Less emotionally positive About what you expected 쐌 If someone were to ask you sometime in the future to donate bone marrow, do you think you would be willing to donate once more? Would donate Would not donate Unsure 쐌 If a recipient needed a second transplant, do you think you would be willing to donate a second time? Would donate a second time Would not donate a second time Unsure 쐌 What would your advice be to someone who was considering being a donor? Would you . . . Encourage someone strongly Encourage someone a little Discourage someone a little Discourage someone strongly

— 10.5 57.9 31.6 — — 15.8 84.2 15.8 26.3 57.9 5.3 57.9 36.8 26.7 40 33.3 78.9 — 21.1 84.2 — 15.8 68.4 26.3 5.3 —

Percentages are adjusted for missing values.

with. This supports a religious notion of Buddism in which an individual is locked into cycles of rebirth in which complete bodies are crucial and should not be tampered with by human intervention. A second theme was that of the association of bad fortune with marrow donation with respondents citing ‘rheumatism in old age’, mental illness or other examples of weakened health seen to be associated with the act of marrow donation. For women, this theme of bad fortune was associated with infertility and their possible inability to continue the family line so disrupting the flow of lineage. A third theme was that of public messages informing ones social identity and included explicitally religion with four donors citing the Christian theme of giving to others, and friends’ and peer influences such as knowing someone who had previously donated. Another theme was that the donors had a need to establish a sense of altruism and reciprocity which informed their self identity. Within this it was important not to give away too much of oneself while hiding the act of donation from family members and employers. The final theme of the qualitative data was related directly to physical and emotional effects of the donation and included pain experienced both immediately and some time after the procedure and the lack of information given in which donors felt that their notions of altru-

ism were negated by the reality of their encounters with the hospital. Discussion The literature drawn from non-Chinese populations has provided evidence that individuals post bone marrow donation think better of themselves, have a heightened self-esteem and an enhanced self evaluation.11,12 However, our data show that this is not the case with Chinese marrow donors, possibly due to cultural influences and social norms. Chinese donors did not change the way they were thinking of themselves as a result of the donation, and they neither thought of the donation as a sacrifice nor as a heroic action. This suggests that, unlike donors in Western cultures, the act of donation in Chinese people is not associated with a social identity but rather it is contained within the individual. In an earlier American study, individuals donated marrow to actualise a social identity (ie helping person, role model),12 which was not evident in our sample. Further, Simmons et al12 suggest that increased global self-esteem might not be observable in unrelated marrow donors, as they do not have knowledge of the recipients’ degree of


improvement which would boost their self-esteem. In past studies, the Better Person scale yielded considerably higher mean scores in American samples of bone marrow donors and even kidney donors12 compared to the current data. Also, referring to the same scale, Butterworth et al11 showed that their sample of marrow donors found the experience of donation considerably more positive (60%) and only 6% found it less emotionally positive (compared with 26.7% and 40%, respectively, in the current sample). Also, more of the donors were willing to donate again or strongly encourage somebody to do so11 compared to the present sample. Lower scores of self-esteem have also been observed in our study compared to other published work using the Rosenberg Self-esteem scale.12,26 A question of interest is how well concepts such as ‘better person’, ‘heroism’, ‘self’ or ‘self-esteem’ translate from Western cultures to Asian cultures. Under a Confucian interpretation ‘heroism’ and being a ‘better person’ are concepts that do not translate well, as the self is seen to exist only in a relationship with others. Within such a system, the self needs to be kept in check at all times as there is no place for the ego; the role of the self is not to express and manifest itself, and a subordinate self will serve to establish a family and moral self.27 In addition, giving and maintaining ‘face’ are central to Chinese interpersonal relationships, and behaviours such as striving to be a ‘better person’ or ‘heroic’ profoundly violate this,28 as they reflect more egocentric and assertive Western prototypes of self. However, it might be contended that in the face of rapid social change within a highly urbanised city such as Hong Kong, the young do not subscribe to this view, as was also seen in the qualitative part of this study, in which donors indicated that donation was a self-fulfilling act and had little to do with social approval.18 Nevertheless, improvements in mood states were observed in the donor sample, as they demonstrated less anger–hostility and less fatigue (a biopsychosocial symptom) compared with a matched sample of non-donors. Furthermore, a trend was observed in the donor sample of being less depressed and showing less overall mood disturbance compared to those subjects that did not donate their bone marrow. This suggests the indirect positive effects that the marrow donation may have on the donors’ psychosocial status, so confirming earlier reports.12,14 Generosity and perhaps a normative obligation behind the decision to donate bone marrow may constitute the sociological mechanisms producing a Chinese specific version of altruism. These may be reflecting the ‘socially contextual ego ideal’ which characterises many Asians28 and it is distinctly opposite from the ego ideal seen in Western cultures, which is more individualistic. Role appropriation, duties, consideration, mutual obligations in relationships and reciprocity inform the socially contextual ego ideal, whereas personal autonomy, assertiveness, self confidence and self determination are some of the characteristics of the individualistic ego ideal.28 In Chinese culture hierarchy and harmony are fundamental in which generalised interpersonal reciprocity is central and the duties to the family paramount. Although the majority of the donors had no after-effects, some found the experience of donation physically stressful

(10.5%) and they were worried about their future health as a result of the donation (15.8%). Such experiences need special attention, not only because they will harm recruitment if these donors speak about their negative experiences, but also because the donors are not routine patients and as such require special care and appreciation.29 In addition to the special care and social recognition donors deserve for their altruism and generosity, they should also be able to gain self rewards from the donation, contributing to a very positive experience of the donation. Speaking to other people about the positive experience of donation could increase volunteers and this is particularly important in donation centres where ethnic groups are underrepresented. It is interesting to see that in our sample, 40% of the donors found the experience of donation less emotionally positive. As the main physical problem experienced was pain/ discomfort at the puncture sites, more effective pain management should be planned. Perhaps one of the most important issues identified in the study was the perceived lack of preparation for the donation. This is also unlike other reports in the Western literature.11 Although the donors were carefully assessed and full informed consent was obtained prior to donation, they felt they needed more preparation. Careful counselling is deemed necessary, which must include a detailed explanation of the donation process in order to decrease procedural anxiety, fears or misconceptions (one donor commented that, despite the information given to him, he believed until the very last moment of the marrow harvest that he would undergo a ‘spinal fluid aspiration’). The current sample of donors was not aware of the outcome of the donation (except in one case). Knowing the outcome of the donation can have major effects on the donors self-identity. A positive outcome can be associated with a heightened self esteem and encouragement of future altruism.12 However, a negative outcome may be associated with feelings of regret, grief, guilt and responsibility about the death of the recipient.6,7,26 Our donor who learned about the outcome of the donation (the recipient died) expressed many negative feelings, including frustration, depressive thoughts and unwillingness to donate again. Giving the opportunity for a prospective donor to discuss issues and experiences around the donation with someone who has donated bone marrow before, acting as a donor advocate,9 may be worthwhile to assist in the decisionmaking process. Doctors and nurses involved in the marrow donation should better understand and pay careful attention to the needs of the donors. It was apparent from the qualitative arm of the study that cultural and social factors could deter potential donors at different stages of the donation process.18 The donation team should be aware of such factors, both for improving recruitment of volunteers and for identifying/treating the uncertainty and ambivalence in the donors. Ambivalence over the donation was found to be associated with post-donation reactions in earlier studies,14,15 increasing anxiety, mood disturbance and to contribute to the development of longer-term psychosocial effects. Such problems could be alleviated if there is follow-up of the donors at regular intervals by the donor co-ordinator or a donor welfare officer.29 Setting up peer

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support donor groups that would allow donors to share experiences may also be helpful. Despite difficulties experienced during the donation by the donor sample, it was encouraging to find that the majority would donate again if matched again with a patient, and the majority would recommend donating to others. Some donors experience problems, however, and the donation team needs to be more vigilant in identifying and treating specific concerns. The findings of the study should be seen in the light of the small sample size, while acknowledging that a total population of marrow donors in Hong Kong was drawn upon. Further research should be directed at assessing prospectively the needs of donors at different stages of the donation process and how these needs could be better fulfilled, based on the expectations donors have from the donation. Acknowledgements We would like to thank the staff in the Hong Kong Marrow Match Foundation for their invaluable assistance and the donors who shared their experiences with us. The study was funded by Direct Grant No.2040623, Faculty of Medicine, Chinese University of Hong Kong.

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