ORIGINAL ARTICLE
Adaptation of family caregivers during the acute phase of adult BMT
BL Fife
1,2
, PO Monahan
3
, R Abonour
4
, LL Wood
5
and TE Stump
3
1
Indiana University Simon Cancer Center, Indianapolis, IN, USA;
2
Indiana School of Nursing, Indianapolis, IN, USA;
3
Division of
Bio-Statistics, Indiana University School of Medicine, Indianapolis, IN, USA;
4
Multiple Myeloma Program, Indiana University
School of Medicine, Indianapolis, IN, USA and
5
Bone Marrow and Stem Cell Transplantation Program, Indiana University Cancer
Center, Indianapolis, IN, USA
This study examined the course of adaptation as indicated
by the level of emotional distress for family caregivers of
adult BM recipients across the acute phase of the
transplant trajectory. Factors influencing caregivers’
adaptation that could be potential markers of vulner-
ability to psychological and social morbidity were
identified. The sample included 192 caregivers of either
an autologous or allogeneic BMT recipient. Data were
collected by self-report questionnaires at three time points
in the trajectory: pre-transplant/pre-hospitalization (T1);
during hospitalization, post-infusion (T2); 1 month post-
discharge (T3). There was a decline in emotional distress
from T1 to T3, and bivariate correlations indicated
significant association of distress with variables hypothe-
sized to be theoretically relevant. Specifically, greater
personal control, a greater sense of spiritual connected-
ness, less disruption in the life of the caregiver and less use
of avoidance coping were the strongest factors associated
with lower emotional distress. In conclusion (1) levels of
personal control and spirituality remained stable across
time and were negatively associated with emotional
distress. Therefore, they may provide an indication of
caregiver resilience pre-transplant; (2) level of recipient
symptomatology rather than BMT type appears to
influence caregiver distress; (3) there are indications of
the need for post-hospitalization follow-up with caregivers
by the BMT team.
Bone Marrow Transplantation (2009) 43, 959–966;
doi:10.1038/bmt.2008.405; published online 22 December 2008
Keywords: adaptation; stress; caregiver
Introduction
BMT is characterized by a difficult and protracted
trajectory involving persons who have previously received
a diagnosis of life-threatening illness. It is marked by the
risk of significant complications, with survival of the
recipient being the predominant concern. The family
caregiver, who is most frequently a spouse, is a key partner
throughout this difficult experience, and a threat to the life
of the recipient is a threat to the social, psychological and
emotional well-being of the caregiver.
1
Homecare of the recipient following transplantation is
often exceedingly demanding, resulting in major family
disruptions, which, along with the stress of life-threatening
illness, leave the caregiver vulnerable to the development of
secondary psychosocial morbidity. Complex treatment
procedures are frequently required, and technical support
for problems that may arise is often not available when it is
needed most; furthermore, guilt may be experienced if the
BMT recipient suffers further complications while receiving
care at home. In this situation, both the recipient and
caregiver often experience intense emotional distress.
2–4
In
fact, findings indicate that the level of distress experienced
by caregivers often exceeds that of recipients, and they are
less likely to obtain mental health intervention.
5–6
There-
fore, identifying those variables that may be associated with
a high risk for the development of stress-related problems
in the caregiving partner is critical to preventive interven-
tion. Adaptation of the caregiver is important not only for
his/her own well-being but also for family relationships that
have been found to be important determinants of the
recipient’s physical and emotional recovery.
7–9
This is not
surprising, given the interdependence within this partner
relationshipwhere one individual’s cognition, emotion and
behavior affects the cognition, emotion and behavior of the
other.
10–12
Caregiving in the crisis of life-threatening illness includes
major role changes. The BMT recipient is at least
temporarily unable to function as an equal partner sharing
responsibilities and providing mutual support, and the
caregiver takes on the role of the lone executive in a family
who is experiencing high levels of threat and disruption. In
discussing mental health vulnerability when taking on new
roles in general, Simon
13
enumerates five factors that are
applicable to BMT caregivers. First, there is the pre-
existing stress of a cancer diagnosis. Second, there is a high
level of uncertainty regarding the outcome of the BMT, and
in some cases the goal is an extension of life rather than a
cure. Third, it is challenging for a caregiver to maintain
some sense of personal control. Fourth, the role is highly
Received 14 June 2008; revised 24 October 2008; accepted 3 November
2008; published online 22 December 2008
Correspondence: Dr BL Fife, School of Nursing, Indiana University,
1111 Middle Drive, 464, Indianapolis, IN 46202, USA.
E-mail: bfife@iupui.edu
Bone Marrow Transplantation (2009) 43, 959–966
& 2009 Macmillan Publishers Limited All rights reserved 0268-3369/09 $32.00
www.nature.com/bmt

disruptive to the caregiver’s personal life. Fifth, there are
major demands on financial and other family resources.
Background
Stressors in the life of a caregiver are twofold. They result
from hardships that are a part of the caregiving role itself,
whereas others are a result of the strains that the caregiving
role imposes on the existing responsibilities and activities in
the caregiver’s life.
14
Several descriptive studies examining
the impact of the stress of BMT on the quality of life of
these caregivers are reported in the literature.
Two focus groupstudies, which included a convenience
sample of 19 caregivers of BMT recipients within 90 days of
the transplant, examined the stress they were experiencing
and the factors influencing their quality of life.
15–16
Several
themes emerged. First were concerns regarding preparation
for the BMT, knowing what to expect, obtaining adequate
information to function safely as caregivers, and the need
to arrange for homecare resources and back-up support in
the case of an emergency. Additional concerns included the
need to protect the recipient while providing him/her with a
‘connection with life.’ Issues regarding caregiver burden
included taking on unfamiliar roles without adequate
support, the potential for development of interpersonal
conflict within the family, learning new coping strategies
such as accepting help from others, and managing multiple
roles. In addition, there was anxiety about maintaining a
cohesive family environment in the face of disruption while
helping other family members, that is, children, coping with
alternate periods of hope, fear and depression.
Eldredge et al.
17
examined caregiver role strain during
the first 100 days following BMT and found that caregiver
distress decreased as recovery progressed. The degree of
caregiver strain was associated with the extent of role
preparedness and the level of disruption. In a cross-
sectional study with a mean of 7 years post transplant,
Bishop et al.
18
found caregivers’ psychological status to be
poorer than that of the recipients.
Siston et al.
9
conducted a study of 40 recipients and 39 of
their caregivers before allogeneic transplantation using
standardized questionnaires at this single time point. The
overall level of distress of caregivers equaled that of the
recipients, whereas caregivers experienced even greater
difficulty with family relationships. A longitudinal study
of 28 BMT recipients and a ‘close relative,’
19
which
included pre-transplant to 12 months post transplant,
found that 88% of the caregivers were highly distressed
pre-transplant as well as post transplant; this exceeded the
number of BMT recipients who were equally distressed.
Zabora et al.
20
also examined an adaptation of both the
recipient and the caregiver using structured interviews and
standardized measures over a period of 24 months. The
findings in a report on three families point to a perception
of the recipient’s chance for survival as being the primary
factor in adaptation.
This review of earlier research findings consistently
points to the distress and vulnerability of BMT family
caregivers who are central to the recipient’s progress and
recovery. This becomes an increasingly significant issue
given the shorter hospital stays that are now typical of
the BMT regimen, as it places greater responsibility and
demands for high tech management on the caregiver.
However, studies of this population are marked by limited
sample sizes and data collection at varied points in the
trajectory that often do not include a baseline measurement
of key variables. The purpose of this prospective study is to
examine the experience of the BMT caregiver during the
most acute period of transplantation: specifically, before
transplantation, during the period of hospitalization and 1
month after the recipient has returned home. Coping
patterns established early in the transplant trajectory are
critical to determining the effectiveness of stress manage-
ment throughout the trajectory and, therefore, to long-term
adaptation; consequently, understanding coping during
this time period provides an important foundation for
the development of preventive interventions. Given this
emphasis, two primary questions were addressed: (1) What
was the course of adaptation across this acute phase of the
BMT trajectory in this sample, as indicated by the level of
emotional distress? (2) What factors influenced caregiver
adaptation that may indicate the potential for development
of secondary psychosocial morbidity?
Participants and methods
Sample
Study participants included 192 caregivers of individuals
undergoing either an allogeneic or an autologous trans-
plant. The caregiver was identified as the family member
living in the home with the recipient who was assuming
primary responsibility for providing physical care and
emotional support. Most frequently, they were spouses
(91%), but they also included committed partners and
parents, and 72% were women. All the recipients were
undergoing a BMT for the first time, and they primarily
included individuals with leukemia, lymphoma, a germ cell
tumor or multiple myeloma. Demographic details are given
in Table 1.
Procedures
Caregivers eligible for this research were identified and
referred to us by the BMT team. We presented an overview
of the study in an orientation session held as a part of the
BMT Program to inform recipients and their caregivers
regarding expectations for the treatment process. Most
recipient caregivers attended this session, and those who
did not were informed about this study during the
consenting process. If they expressed an interest in learning
more about participation, they were given written details
and were asked to sign a consent form to be contacted.
Further contact was then made by the project manager or a
research assistant who explained the study procedures, and
a consent to participate was offered. Approximately 75%
of the eligible caregivers attending this information session
consented to participate, and it is estimated that approxi-
mately 85% of those informed individually also consented;
therefore, a conservative estimate is that the consent rate
was approximately 80%.
Adaptation of BMT family caregivers
BL Fife et al
960
Bone Marrow Transplantation