Bone Marrow Transplantation (2012) 47, 1361 -- 1365

& 2012 Macmillan Publishers Limited All rights reserved 0268-3369/12

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ORIGINAL ARTICLE
The psychosocial impact of haematopoietic SCT on sibling
donors
B Pillay1, SJ Lee2, L Katona3, S De Bono4, N Warren5, J Fletcher6,7 and S Burney6,7

The physical and psychosocial consequences for patients undergoing blood SCT for the treatment of cancer and their families
have been extensively documented. There has, however, been far less investigation into the psychosocial consequences for
sibling donors who are both family members and undergoing an invasive medical procedure. The aim of this study was
therefore to explore the psychosocial impact of PBSC donation before, during and after donation, and to gain insight into
donors’ experiences of the preparation for, and procedures associated with, donation. Participants included 13 men and 9
women, with a mean age of 53.1 (SD ¼ 9.4) years, who underwent PBSC or BM donation between 2007 and 2010. Data were
collected via face-to-face or telephone interviews and a questionnaire. Results revealed that a broad range of both positive and
negative emotions were experienced at different time points during donation. The psychosocial impact of donation was also
influenced by the interactions between factors such as pragmatic aspects of the donation process; family dynamics; perceived
adequacy of preparation and emotional support; and uncertainty related to health outcomes for the recipient and donor.
Routine provision of psychosocial support to donors as well as recipients is therefore important.

Bone Marrow Transplantation (2012) 47, 1361 -- 1365; doi:10.1038/bmt.2012.22; published online 20 February 2012
Keywords: cancer; oncology; hematopoietic stem cell transplant; donor experience; psychological distress

INTRODUCTION fluctuates, which can cause ongoing donor stress.18 Recipient

Haematopoietic SCT (HSCT) is a common treatment for haema-
tological cancers,1 such as acute leukaemia, lymphomas, multiple
myeloma, as well as severe aplastic anaemia. HSCT can either be
autologous (patient’s own stem cells) or allogeneic (donor stem
cells);2 donors can be unrelated volunteers or relative donors,
most commonly, siblings. Collection occurs either via BM harvest
(BMT) under general anaesthesia3 or, now more commonly, PBSC
collection. PBSC donors receive injections of granulocyte colony-
stimulating factor to increase stem cell production and then
undergo aphaeresis to collect the blood stem cells.4,5 The main
symptoms experienced by PBSC donors are muscle aches, fatigue
and bone pain,6,7 whereas BM donors experience more pain and
fatigue post donation.8 - 11
For donors, compared with the physical consequences of HSCT,
the psychosocial impact has received far less attention and is the
focus of this paper. Depression, anxiety and post-trauma
symptoms have been identified in HCST patients.12 - 14 Family
members and caregivers can also experience significant psycho-
logical distress.15 Sibling donors have the dual role of family
member as well as a donor, which may render them psycholo-
gically vulnerable in a manner that is different from the patient
and other family members/caregivers. Many donors experience
anxiety as the donation date approaches because of the fear of
undergoing an invasive experience;16 they also report anxiety
resultant from granulocyte colony-stimulating factor injection-
related pain and fear of the unknown.17 Recipient’s post-donation
outcomes have also been linked to donor psychological function-
ing. Following transplantation, a recipient’s health status often
death has been shown to produce short-term-negative feelings
following donation,19 with research indicating that donors for
recipients who have not survived remain significantly more
depressed than donors with living recipients 6 months after
donation.20 Longer-term psychological gains have also been
reported.19
Although research has demonstrated the psychosocial impact
of donation on donors, what is not yet known is how to best
address these needs. The lack of awareness of how to address
donors’ psychosocial needs was highlighted recently in a review
detailing principles and recommendations for family donor care
management.21 No mention was given of the increased risk of
adverse mood symptoms in family donors. Follow-up of physical
adverse effects was recommended, but engagement of support
from psychosocial professionals during or following donation was
not. This study therefore aimed to explore sibling donors’
experience of preparing for and undergoing donation, to detail
the nature and causes of psychological distress, and to provide
insight into how services can better support donors’ psychosocial
needs before, during and post-donation.
MATERIALS AND METHODS
Participants
People who were, PBSC or BM sibling, donors at a hospital in Melbourne,
Australia between 2007 and 2010 were eligible to participate. A total of 59
sibling stem cell donations occurred during this time. In most cases, the
harvesting clinician was also the recipients’ clinician. Three donors were

1
School of Psychology and Psychiatry, Monash University, Clayton, Victoria, Australia; 2Monash Alfred Psychiatry Research Centre, Alfred and Monash University, Melbourne,
Victoria, Australia; 3Department of Psychology and Consultation Liaison Psychiatry, Alfred Health, Melbourne, Victoria, Australia; 4Patient and Family Services, Alfred Health,
Melbourne, Victoria, Australia; 5Social Sciences and Health Research Unit, Monash University, Caulfield, Victoria, Australia; 6Cabrini Monash Psycho-oncology Research Unit,
Cabrini Health, Malvern, Victoria, Australia and 7School of Psychology and Psychiatry, Monash University, Clayton, Victoria, Australia. Correspondence: L Katona, Department of
Psychology, The Alfred, PO Box 315, Prahran, Victoria 3181, Australia. E-mail: l.katona@alfred.org.au
Received 7 September 2011; revised 19 January 2012; accepted 19 January 2012; published online 20 February 2012
 Psychosocial needs of stem cell transplant donors
B Pillay et al
1362
excluded because current contact details were unavailable (living overseas
at the time of the study), and one participant was excluded because of
insufficient English language skills. Pillay sent a letter inviting participation
to the last recorded address of the remaining 55 donors, with a follow-up
phone call provided if no initial response was received. In all, 22
participants (40% response rate) consented to participation in this study,
with participant characteristics displayed in Table 1. A comparison of
donors who did or did not participate was performed. Independent
samples t-tests found that there was no significant difference in age
(P ¼ 0.20) or years after donation (P ¼ 0.58). w2 tests of independence also
found no significant differences in the proportion of living recipients
(P ¼ 0.11), gender (P ¼ 0.38) or relationship to recipient (P ¼ 0.71).
Measures
Data were collected using a questionnaire designed by the research team,
which also guided phone and face-to-face interviews to ensure consistency
of data collection. All participants completed all items. The varied
approaches to recruitment were made available following recognition
that a number of participants lived several hours travel from the hospital or
interstate, preventing completion of face-to-face interviews. Participants
chose their preferred option for participation.
The 26-item questionnaire assessed the following domains: personal
details; issues before, during and after donation and overall impressions of
the donation process. Regarding personal details, five questions assessed:
age; gender; nature of relationship and frequency of contact with recipient
and closeness with the recipient rated on a scale of 0 (not at all) to 10
(very). In exploring pre-donation issues, seven questions assessed: their
decision to donate; whether donors felt pressure to donate; thoughts and
feelings about being a donor before donation; sources of information
(using a checklist of available sources) and the most helpful source of
information about donation; preparation for donation assessed using a
4-point scale ‘not at all adequate’ to ‘very adequate’; and how the hospital
could improve donor preparation. Eight items assessed issues during
donation: whether physical side effects or lifestyle inconveniences were
experienced; thoughts and feelings about being a donor; sources of
emotional support and use of emotional support services of the hospital;
adequacy of emotional support from the hospital and other sources
assessed using a 4-point scale ‘not at all adequate’ to ‘very adequate’; and
how the hospital could improve donor emotional support. A single item
assessed thoughts and feelings about being a donor after donation. Finally,
five items assessed: experience compared with expectations about
donation assessed using a 5-point scale ‘much worse than expected’ to
‘much better than expected’; whether the act of donation changed the
relationship with the recipient or other family members; whether the
recipient was still alive; would they choose to donate again and what was
the most challenging aspect of donation.
Owing to the limited potential participant pool, pre-testing of the
measure was not completed. However, assessment of face validity and
appropriateness of items and questionnaire format was completed by a
panel of cancer care clinicians and academics, including a medical
anthropologist.
Table 1. Characteristics of participants
Total participants: n 22
Age: mean (range) 52.32 (33 - 68)
Gender: n (%)
Male 13 (59)
Female 9 (41)
Relationship to recipient: n (%)
Brother 13 (59)
Sister 9 (41)
Recipient living at the time of study: n (%) 18 (82)
Years since donation: mean (range) 1.59 (0 - 3)
Bone Marrow Transplantation (2012) 1361 - 1365
Procedure
The conduct of this study was approved by The Alfred Hospital and
Monash University human Research Ethics Committees. Six participants
completed face-to-face interviews, nine completed phone interviews and
seven completed the questionnaire. Pillay conducted all phone and face-
to-face interviews, which were digitally recorded, transcribed verbatim and
supplemented by notetaking. Completed questionnaires were returned via
reply paid envelopes. Data saturation, the point in data collection when no
new themes emerge,22 was apparent after 15 interviews.
Analyses
Qualitative and quantitative data were collected. Frequency analyses and
comparisons of continuous data were performed with SPSS/PASW
Statistics 18.23 Qualitative data from interviews and questionnaires were
analysed as one data set using the six-stage thematic approach proposed
by Braun and Clarke.24 This involved: familiarisation with responses,
generation of initial codes, collation of codes into potential themes,
reviewing themes in relation to coded extracts and the entire data set,
defining and naming themes and reporting on outcomes. Themes were
identified in two ways using the constant comparison approach25 by
(a) noting their frequencies across the data or (b) considering the extent to
which each related to the research questions. To ensure consistency of
coding, primary analysis was performed by Pillay, with cross-checking of all
data performed by Warren. Any discrepancies were negotiated in
discussion between both authors. Coding of data was facilitated through
the use of NVivo 8.26
RESULTS
For the 22 participants, pre-donation frequency of donor --
recipient contact ranged from daily (9%), weekly (32%), monthly
(41%), to yearly/less frequent (18%) contact. Most participants
described the relationships with their siblings as closer after the
diagnosis of illness. However, the average ratings of pre- (M ¼ 6.95,
SD ¼ 2.46) and post-illness closeness (M ¼ 7.38, SD ¼ 2.31) did not
differ significantly, t(20) ¼ 1.63, P ¼ 0.12. For some, the lack of
close contact was due to geographical distance. However, four
donors reported extended periods of little or no contact because
of previous conflict.
Regarding perceived changes in the donor -- recipient relation-
ship, 12 donors (55%) reported becoming emotionally closer to
the recipient following donation. The remaining donors reported
little change in relationships with their recipient and other family
members. As one donor stated, ‘The issues we had before
donation are still there.’
Preparing for donation
A total of 15 (68%) donors said that they did not hesitate in
deciding to donate. Their decision was not described as conscious,
but rather as ‘so natural’ that it did not require consideration.
However, upon close examination of donors’ responses, a number
of motivations for donation were reported (Table 2). Therefore,
despite 20 (91%) participants stating that they ‘did not feel
pressured to donate’, a number of factors may have been
considered by donors (for example, knowledge that the transplant
was the only chance of survival for recipient) that applied implicit
pressure in deciding to donate.
Most donors obtained information about donating from their
sibling’s haematologist (see Table 3). The internet and transplant
coordinator were also common information sources. Most
participants appreciated the information obtained through con-
versations with medical staff, as this allowed them to immediately
clarify their concerns while providing information about possible
donation outcomes. However, the brevity of appointments left
some donors feeling as though their concerns were unimportant.
The perceived objectivity of information from brochures meant
that these were preferred by some.
& 2012 Macmillan Publishers Limited
 Psychosocial needs of stem cell transplant donors
B Pillay et al

Being provided with relevant information in a timely manner
was important in alleviating donors’ concerns. Information about
the procedure (for example, potential side effects and discom-
forts) and the benefits and risks of the transplant for the recipient
and donor were particularly important. Several donors experi-
enced uncertainty about the long-term effects of the granulocyte
colony-stimulating factor injections, such as the possible devel-
opment of leukaemia, causing significant anxiety. Being unpre-
pared regarding the range and severity of physical symptoms was
also a source of anxiety. One donor’s unpreparedness for the
severity of bone pain due to pre-donation injections led to
considerable distress.
In addition to accessing information about donation, donors
also took other steps to prepare themselves for donation. This
included seeking assistance from family members to administer
pre-transplantation injections, a process described as challenging
by many donors. Three donors (14%) also reported making efforts
to ensure their own optimal health, with the hope of maximising
the outcomes of the transplant for the recipient as demonstrated
by the following:
‘I stopped smoking for 2 -- 3 months, starting from about 1
week before I started injecting myself. I asked if smoking
1363
affects the blood stem cells that I would donate. They said no.
But I would rather stop smoking and give him the best possible
chance’.
Emotional experience of donation
Table 4 details donors’ emotional experiences across the donation
process. Positive emotions stemmed from excitement from being
a match and contributing to helping their family member as well
as relief that something was being done. Guilt and responsibility
for the outcome were commonly expressed despite an under-
standing at an intellectual level that donors were not responsible
for the negative outcomes. One donor expressed this conflict as
follows:
‘He became very ill and that was a time of very high anxiety
and uncertainty as to whether he would survive. I guess at that
point I felt some sense of responsibility. My head knows that I
am not responsible, but my heart felt ‘wouldn’t it be awful (if) I
was part of that process?’
Similarly, 12 donors (55%) indicated that the heightened sense
of anxiety experienced post donation was prolonged because of
uncertainty about the outcome, as recipients often encountered
fluctuations in health status.

Table 2. Reported motivations for donating Factors impacting on emotional reactions

a
Family dynamics. Some donors said that their experience was
Motivation n (%) made more pleasant because of supportive family networks, and
Family ties 13 (59) expressed a sense of satisfaction and validation from positive
Only chance of survival for patient 7 (32) comments and gratitude from close family. Negative emotional
Ability to help without detrimental effects to self 5 (23) consequences of family dynamics, however, were also reported.
To relieve suffering of another individual 3 (14) For example, prior tensions between family members were
Reciprocity of good deeds 2 (9) exacerbated as a result of the patient’s diagnosis and the need
a for stem cell donation.
Multiple responses were given by some donors.
‘Things really deteriorated with my parents, the period (my
brother) was in hospital, when we didn’t know if he would live or
die. I think (my father) tipped over the edge because my brother
Table 3. Donation information sources was suffering from leukaemiay so he took it out on me.’
Donors also reported conflicting expectations and agendas of
Source of Information n (%)a
different family members. One BM donor reported distress when
Haematologist 15 (68) her brother did not receive adequate care from other family
Internet 10 (45) members. She believed that she was expected to support multiple
Transplant coordinator 11 (50) family members despite having undergone the donation proce-
Books 7 (32) dure.
Videos 4 (18)
Friends/family 3 (14) Adequacy of emotional support. The nature and source of
General practitioner 1 (5)
emotional support also shaped emotional experiences. In all, 17
a (77%) donors rated their emotional support from sources other
Multiple responses were given by some donors.
than the hospital, such as family, friends and external counsellors,

Table 4. Emotional experiences described prior to, during and post-donation

Pre-donation During donation Post donation

Positive  Excitement, relief, gratitude
emotions and happiness at being a
match
Negative  Shock about sudden need
emotions for transplant
 Concern about risks to self
due to injections
 Nervous about impending
procedure for self
 Anxious about outcome for
recipient
 Sense of satisfaction as finally
able to help in some way
 Anxious as to whether enough
blood stem cells were produced
 Self-pity
 Distressed over possibility of
transplant not having desired
outcome
 Relief that recipient’s suffering has reduced due to
positive transplant outcome or death after prolonged
illness
 Glad to have done procedure, as it gives hope
 Diminished mood, as nothing more can be done
 Shocked by unexpected complications after ‘successful’
transplant
 Distressed by physical changes in recipient
 Guilt and responsibility for outcome
 Ongoing anxiety due to fluctuations in recipient’s health

& 2012 Macmillan Publishers Limited Bone Marrow Transplantation (2012) 1361 - 1365
 Psychosocial needs of stem cell transplant donors
B Pillay et al
1364
as ‘very adequate’, whereas 13 (59%) described the emotional
support provided by the hospital as ‘moderate’ or ‘very adequate’.
The quality of interaction with medical staff also impacted on
emotional coping. As a reflection of differing practices by health
professionals, the extent of positive communication with medical
staff varied across donors. Some donors expressed gratitude for
how the hospital provided ongoing care and access at any time.
Other donors said that the nurses made every effort to ease their
anxiety, particularly during the donation procedure. However, not
all donors agreed that they received high quality support. Six
(27%) donors expressed a desire for more emotional support from
the hospital, with two (9%) others reporting that they felt
neglected and that they were used merely as a means of curing
the patient:
‘I hoped for something from the hospital they wanted me to be
on the other side of the country in a couple of days and then it
was like ‘thank you very much’. I felt treated like a number.’
Overall impression of the donation experience
When asked about the most challenging aspect of donation,
emotional distress was reported by 15 (68%) donors, physical
discomfort by nine (41%) and disruption to daily activities by one
(5%). Table 5 summarises the physical and lifestyle inconveniences
experienced by donors. All but one donor said that they would
donate again, while one said they would consider their own health
and age before doing so. Donors reported that despite their
emotional and physical distress, they had an easier role compared
with their ill siblings and were giving them a chance for survival:
‘It is such a small period of being in pain and discomfort. It is
nothing compared with giving someone a life.’
Suggestions for improving donor support services
Donors offered the following suggestions for improving their
preparation and hospital-provided emotional support: post-dona-
tion follow-up care (46%); provision of preparatory information
about the physical and emotional burden of donation well before
the actual event (18%); help with self-injecting (15%) and
information about the post-donation condition of the recipient
(9%). Financial assistance to cover travel costs was also suggested.
Table 5. Physical and lifestyle impacts of donation
Impact
Physical symptoms before donation
Aching bones
Painful injections
Headaches
Bloated sensation
Physical symptoms during donation
Painful needles
Discomfort with restricted movement
Tingling lips
Physical symptoms post-donation
Fatigue
Faintness
Lifestyle inconvenience
Time missed from work 15
Travel time
Attending medical appointments
Travel costs
Waiting for donation to happen
a a single hospital therefore limits generalisation of study findings.
Multiple responses were given by some donors.
Bone Marrow Transplantation (2012) 1361 - 1365
DISCUSSION
This study explored the experiences of HSCT sibling donors in
preparing for and undergoing donation. It focused on the nature
and severity of psychological distress associated with donation to
inform service improvement regarding the provision of psycho-
social support to these donors.
Consistent with previous research,17,27 donors’ decisions to
donate were made with little hesitation, regardless of their pre-
diagnosis relationship. However, despite stating they were not
pressured, implicit pressures were evident that may have
influenced their decision. This has implications for informed
consent for donation, particularly given that most donors received
information about donation from their sibling’s haematologist.
Concern has previously been raised regarding situations where
recipients and donors receive treatment from the same health
professional, as situations of conflict of interest are most likely to
be resolved in favour of the recipient.21 To guard against this,
donors should be given the opportunity to discuss concerns about
donation with a clinician not involved in the recipient’s care.21
Positive and negative emotions were reported by donors
before, during and following donation, with a number of factors
that impacted on donors’ emotional experiences identified.
Adequacy of preparation for donation was important and has
previously been shown to influence the experience of distress.17,28
Donors in this study reported anxiety related to not receiving
sufficient information about issues such as the severity of physical
side effects (for example, pain exceeded donor expectations) and
long-term impacts of donation. Uncertainty about the link
between donation and developing cancer was particularly anxiety
provoking.
Adequacy of emotional support was also important: donors
who stated they were adequately supported regarded their
donation experience as more pleasant. Some donors desired
more emotional support from the hospital. In part, this may be a
reflection of the limited availability of psychology or social work
within the hospital’s cancer service, which often means that only
donors displaying significant psychological distress are referred
for psychosocial support. Family and friends provided a major
source of support for donors, although family dynamics had either
a positive or negative influence. Some donors experienced conflict
with family members, worsening their experience; for other
donors, family members provided support and validation of the
beneficence of their act, which lessened negative emotional
experiences. Some donors avoided expressing their difficulties to
other family members, as they regarded their sick sibling as in
n (%)a greater need of familial attention than themselves. Chang et al.20
suggested that families may neglect donors’ psychosocial needs
9 (41) because of their preoccupation with the recipient. It is thus
6 (27) important for hospital staff to assess donors’ emotional needs, as
2 (9) donors may be unwilling to seek emotional support for
2 (9) themselves.
Following donation, fluctuations in the recipient’s health status
were also a source of distress for donors. Wolcott et al.29 proposed
4 (18) that this was related to the potential implications of physical
4 (18)
deterioration (for example, illness relapse and need for repeated
2 (9)
HSCT) and donor’s active sense of participation in the donation
process. This was exemplified in this study where three donors
6 (27) reported taking measures to maintain their own health to provide
5 (23) their siblings with the best chance of survival. This perceived
active participation translated into a sense of responsibility with
associated guilt if their sibling continued to be unwell.30
(68)
6 (27)
4 (18) Limitations and directions for future research
4 (18) More than half of HSCT donors did not choose to participate or
2 (9)
could not be contacted. The resultant small sample of donors from
Thus, it is not known if the experiences of donors in this study are
& 2012 Macmillan Publishers Limited

representative of the broader HSCT donor populations. Further-
more, as the sample mainly comprised donors whose recipients
had survived the transplant, the experiences of those whose
recipients had died were not adequately documented and a
detailed comparison of the two donor groups was not possible.
The retrospective study design was dependent on the accuracy of
donor recall, and the findings are thus limited. Future research
should utilise a prospective, longitudinal design to determine the
experiences of donors before and following stem cell collection, as
well as the factors that shaped this experience.
Practice recommendations
In light of findings, preparation and care for donors may be
improved by the following:
1. Donors should be given the opportunity to discuss concerns
about donation with a clinician (for example, senior nurse or
doctor) not directly involved in treating the sibling recipient.
2. Information about donation should be offered as early as
possible and delivered in a manner tailored to the preferences
of donors.
3. Information should include the risks and benefits of HSCT for
the recipient; risks to the donor; the donation procedure; range
and severity of possible physical and psychological adverse
effects and available supports.
4. Staff should monitor donors’ comfort with self-administered
injections and provide practical support to donors experien-
cing difficulty.
5. Post-donation psychosocial follow-up (for example, telephone
assessment) should be part of routine care.
6. Donor support groups could facilitate improved contact
between donors and reduce the isolation and helplessness
that is common when a family member is ill. Web-based and
other electronic communication could facilitate this process,
particularly given that donors may not be in the same area.
7. Recommendations for psychosocial care should be incorpo-
rated into national guidelines for stem cell donor care.
In summary, stem cell donors experience a broad range of
psychosocial issues. For sibling donors in particular, donation is
embedded within a familial network that has positive and
negative consequences. In this study, emotional reactions were
experienced at different donation time points, impacted by such
factors as: adequacy of preparation and emotional support;
pragmatic aspects of donation; family dynamics; and uncertainty
relating to donor and recipient health outcomes. As the impact of
donating may persist long beyond the actual donation, providing
psychosocial support to donors and recipients is important.
CONFLICT OF INTEREST
The authors declare no conflict of interest.
ACKNOWLEDGEMENTS
We thank the donor participants for sharing their experience of donation. We also
thank the transplantation coordinators Maureen O’Brien and Georgia Stuart for
assisting with identifying eligible participants. Final thanks to Professor Lenore
Manderson who assisted in guiding the development of the study measure. All
authors declare no conflict of interest related to this project, and no external funding
was received for the conduct of this study.
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