Journal of Pediatric Psychology, Vol. 25, No. 5, 2000, pp. 331-337
© 2000 Society of Pediatric Psychology
Brief Report : Parents of Children Undergoing Bone Marrow Transplantation : Documenting Stress and Piloting a Pschological Intervention Program
University of Florida
All correspondence should be sent to Randi Streisand, who is now at Children's National Medical Center, Department of Psychology, 111 Michigan Ave., NW, Washington, D.C. 20010. E-mail : rstreis{at}cnmc.org
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Abstract |
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Objective : To document levels of stress in parents of children undergoing bone marrow transplantation (BMT) over the course of hospitalization and to pilot a psychological intervention program designed to teach parents techniques for managing stress associated with their child's illness and hospitalization.
Methods : Twenty-two mothers of children (ages 2-16) undergoing BMT were followed prospectively from preadmission to three weeks posttransplant. Eleven mothers, randomly assigned to participate in a pilot intervention program, were compared with 11 control mothers receiving standard care preparation of their child's BMT.
Results : Repeated measures ANOVAs detected significant changes in stress over time, with most stress reported preadmission. Mothers in the intervention condition reported using more stress management techniques than mothers in the standard care condition, though the majority of analyses revealed no significant differences in stress between groups.
Conclusions : Increased levels of parenting distress may occur pretransplant, suggesting the need for additional psychological intervention at that time.
Key words: bone marrow transplant; parental adjustment; psychological intervention; stress..
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Introduction |
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Through the course of their treatment, children undergoing bone marrow transplantation (BMT) experience stressful procedures typical of other children with cancer (e.g., chemotherapy, bone marrow aspirates, and lumbar punctures). However, BMT may be associated with additional stressors given the often lengthy hospitalization and associated restrictions upon discharge (e.g., limited contact with loved ones and friends). The available literature on the psychological impact of pediatric BMT suggests that these children may be stressed ; exhibit poor adherence ; have low social competence, self-esteem, and emotional well-being ; and have multiple concerns upon discharge (McConville et al., 1990
; Phipps et al.,
1995 ; Wiley & House,
1988). In fact, Stuber, Nader, Yasuda, Pynoos, and Cohen
(1991) found that five out of
six children studied were in the moderate range of posttraumatic stress
symptomatology 3 months following BMT.
Researchers have also considered symptoms of stress in BMT family members
(Heiney, Neuberg, Myers, & Bergman,
1994). Findings reveal elevated levels of distress associated with
the process of parental informed consent to BMT
(Dermatis & Lesko, 1990),
parenting (Rodrigue et al.,
1996), and parents' fears of possible relapse
(Sormanti, Dungan, & Rieker,
1994). As studies of parents' stress have largely been
cross-sectional, little is known about how their stress changes as a function
of their child's treatment.
A variety of psychological interventions have been designed in an effort to
decrease the potentially negative psychological consequences for children with
cancer. Most interventions have been designed specifically for children and
typically include behavioral techniques such as distraction, guided imagery,
or progressive muscle relaxation. Five studies have incorporated parents into
interventions (Hoekstra-Weebers, Huevel,
Jaspers, Kamps, & Klip, 1998 ;
Jay & Elliott, 1990 ;
Kazak et al., 1999 ;
Kazak, Blackall, Himelstein, Brophy, &
Daller, 1995 ; Kupst &
Schulman, 1988), although none included children undergoing BMT.
No reported intervention research has been conducted examining parent and
family issues specific to pediatric BMT. Based on what is known about these
families, as well as the reported benefit of interventions to assist with
difficulties related to general childhood illness, we thougt it worthwhile to
examine parents' psychological response to their child's BMT throughout
hospitalization and to design an intervention for families of children
undergoing BMT.
This study had two main foci : (1) documenting stress over time in parents of children undergoing BMT, and (2) piloting a newly designed psychological intervention to better manage stress in parents of children undergoing BMT. We hypothesized that reported stress would be highest shortly after the child's admission, just prior to transplantation. We also hypothesized that subsequent to our treatment, parents in the intervention condition (IN) would report using more treatment techniques and similarly report lower levels of stress than those participants in the standard care condition (SC).
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Method |
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Participants
Parents of children scheduled to undergo inpatient BMT at a large teaching hospital in the southeastern United States were invited to participate. During a 16-month period (8/96 to 11/97), a total of 24 parents were approached for study and 22 (92%) agreed to enroll. All volunteers were English-speaking mothers of children ages 2-16 self-identified as being the primary caretaker during hospitalization. All children were admitted to the same BMT unit, consisting of laminair air flow isolated rooms. Parents were not restricted in their visitation and frequently chose to spend the night in their child's room.
Demographic and illness characteristics of the sample are reported in Table I. Most mothers were married, Caucasian, and had achieved a high school education. The majority of children undergoing BMT were boys (M age = 8 years), with a cancerous (n = 19 ; Ewing's sarcoma, n = 5, neuroblastoma, n = 5, AML, n = 4, ALL, n = 3, osteosarcoma, n = 1, Hodgkin's lymphoma, n = 1), or noncancerous (n = 3) disorder for which BMT was selected as the treatment of choice ; no child studied had previously been treated by BMT.
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Procedure
Study procedures were approved by the university's health science center
institutional review board. All participants received the Division of
Hematology/Oncology's standard preparation procedure at the time of the
child's comprehensive pretransplant evaluation (i.e., usually 2 to 4 weeks
before BMT unit admission). Parents were assessed across six time points. The
first assessment served as a baseline measure completed an average of 13 days
(range 1-47 days) prior to the child's BMT unit admission. After baseline
assessment, participants were randomly assigned to either the IN or SC
condition. All subsequent measures were administered during hospitalization,
by a research assistant blind to the participant's condition. At this
institution, the BMT date was scheduled several weeks in advance, and the
child's conditioning regimen usually began 7 days before transplant. The
second assessment was completed 7 days prior to transplant (day -7), and the
remaining assessments were conducted at weekly intervals through three weeks
post-transplant (days 0, +7, +14, +21).
Intervention.
IN participants were seen by an advanced clinical psychology graduate
student for one 90-minute session in the hospital's psychology clinic.
Intervention sessions were scheduled at the convenience of the family and were
typically held within 1 week of the child's admission to the BMT unit (range
0-30 days prior to admission). The intervention followed a stress inoculation
model found to be effective for a variety of stressful situations
(Jay & Elliott, 1990). A
parsimonious one-session treatment format was chosen to simplify scheduling,
decrease family burden, and maximize external validity. Included in the
intervention were three main components : education, relaxation, and
communication. IN parents received handouts illustrating the components of the
intervention through concrete examples, as well as a tape-player headset to
increase their likelihood of practicing the relaxation training. (Detailed
information about the intervention and semi-structured interview is available
from Randi Streisand upon request.)
To assure the integrity of the intervention, treatment sessions were videotaped. Trained research assistants who were blind to the study's hypotheses examined a randomly selected subset of interventions (n = 5) for content comparison to a detailed treatment outline. Results from rater 1 yielded 100% adherence to the intervention outline, and rater 2's scored treatment integrity was 97.8%.
Measures
Daily Stress Inventory (DSI). The DSI is a 58-item selfreport
instrument assessing the impact of minor stressful events on a daily basis
(Brantley, Waggoner, Jones, &
Rappaport, 1987). The number of events endorsed as having
occurred, and the sum of the impact ratings of those events, comprise the
Events and Impact scores. We computed DSI scores for six time points :
baseline through day +21. Adequate concurrent and construct validity, as well
as good reliability, have been demonstrated
(Brantley & Jones, 1993 ;
Brantley et al., 1987).
Coefficient alphas for the Event scale in our sample ranged from.94 to.98.
Parenting Stress Index (PSI)
We administered the Parent Domain of the PSI, consisting of 53 selfreport
items that measure the relative magnitude of stress in the parent-child system
(Loyd & Abidin, 1985), at
baseline and at day +21. The Parent Domain indicates the degree to which
stress is related to parental functioning across seven areas. Coefficient
alphas for the Parent Domain for our sample were.71 and.81 at preadmission and
day +21, respectively.
Semi-structured Interview (SSINT).
A semistructured interview developed for this study assessed the
frequency (14 items ; 4-point Likert scale) of psychological and
physiological symptoms of stress and the degree to which such symptomatology
affected participants' lives ; we asked if symptoms were a change
(yes/no) from previous functioning and/or considered to be a problem
(yes/no). Interviewers cued participants to consider the previous week in
giving their responses. Seven additional items (7-point Likert scale) asked
parents how stressed they felt during specific times in their child's
medical care (e.g., most recent mouth care treatment, most recent dressing
change). Administration of the SSINT therefore yielded four scores :
frequency, change, problem, and specific stress. Coefficient alphas for the
frequency score ranged from.71 to.85. Participants responded to the
SSINT at four time points (pretransplant, day -7, day +14, and day +21)
throughout their child's BMT experience.
Adherence.
Participants completed a checklist of the various intervention techniques
used during the previous week, at day -7, day 0, day +7, day +14, and day
+21.
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Results |
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Analyses
Planned analyses of variance (ANOVAs) were conducted on demographic information and self-report measures of stress to determine differences between groups at baseline. Repeated measures ANOVAs were computed for each measure of stress. Because of the small sample size and preliminary nature of our research questions, we did not correct for multiple comparison error and instead report ANOVAs and t tests with a p value of <.05 as significant. When appropriate, Welch's t statistics (Nunnally & Bernstein, 1994
) were calculated to compare data from this sample with
published normative data.
Time Effects
DSI.
There was a main effect for time on both the impact, F(5, 90) =
3.27, p <.02 (see Figure
1), and event, F(5, 85) = 4.5 p <.002, scales
of the DSI. In contrast to our hypothesis that stress would be maximized after
admission and just prior to transplantation (day -7), post-hoc paired samples
t tests indicated that stress was higher preadmission for the DSI
impact scale than compared to weeks one, two, and three posttransplant : day
+7, t (18) = 2.70 ; day +14, t (18) = 2.65 ; day +21,
t (18) = 2.49 ; all ps <.05. Post-hoc comparisons of the
event scale yielded similar findings, with more stress reported at baseline as
compared to all other data points except for 3 weeks posttransplant : day -7,
t (20) = 2.58 ; day 0, t (20) = 2.89 ; day +7, t
(18) = 3.20 ; day +14, t (18) = 3.26 ; all ps <.05.
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PSI.
There was a significant main effect for time for two of the PSI subscales
as well. Mothers reported significantly less stress related to their
competence as parents and in terms of role restriction at 3 weeks
posttransplant (day +21) compared to preadmission, F(1, 17) = 10.9
p <.005, F(1, 17) = 4.72, p <.05,
respectively, further suggesting that preadmission was a particularly
stressful time.
SSINT.
For the semi-structure interview, the only significant finding was for
specific stress, F(3, 60) = 7.83, p <.002. Follow-up
comparisons indicated that stresses related to their child's medical care
(e.g., waiting for test results, interacting with nurses, and dressing
changes) were more pronounced preadmission for BMT than at 1 week
posttransplant (day +7, t [21] = 2.37, p <.03) or 3 weeks
posttransplant (day +21, t [10] = 3.69, p <.009). These
results corroborate data obtained from both the DSI and PSI, indicating
substantial parental stress preadmission.
Group Effects
Table II presents means for
both groups at day +21. In contrast to our hypotheses, there were no
significant main effects for group on the self-report measures or any of the
four scores of the SSINT. As expected, a significant group main effect for use
of intervention techniques was found, with IN mothers reporting use of a
greater number of intervention techniques than SC mothers, F(1, 18) =
5.78, p <.03.
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Examination of Clinical Significance
In order to examine the relative magnitude of stress of the parents in our
study, we compared responses on standardized measures of stress to other
relevant samples. On both the PSI and DSI, responses of parents in our sample
were not in the clinically significant ranges. Participants' scores on the PSI
were compared to a primarily nonclinic-referred normative sample
(Abidin, 1995), a sample of 20
parents of preschool age children with diabetes
(Wysocki, Huxtable, Linscheid, &
Wayne, 1989), and 36 parents of children undergoing an evaluation
for transplantation (both solid organ and BMT ;
Rodrigue et al., 1996). At
both preadmission and day +21, mothers in our sample reported significantly
less stress, as indicated by the Parent Domain score, than both the normative
sample and the sample of parents of children with diabetes (all ps
<.05). Responses of parents in our sample were not statistically different
from those for the sample of parents of children in the evaluation phase of
transplantation.
Similar findings emerged when comparing parents' ratings on the DSI to a
normative sample of medical patients (N = 223 ;
Brantley & Jones, 1993).
Parents' impact scores for days +7, +14, and +21 were significantly lower than
the normative sample (all ps <.05). Participants did report a
greater number of stressful events at baseline than the normative sample, yet
impact ratings for the events did not differ significantly between
samples.
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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This study is the first to prospectively measure stress in mothers of children undergoing BMT at regular intervals and to pilot a psychological intervention to assist parents in managing their stress. Results indicated three main findings : (1) increased stress preadmission, (2) parents' ability to learn and put into practice techniques from the intervention, and (3) subclinical distress among parents compared to healthy norms.
The most robust findings were multiple effects over time, with mothers in
both groups reporting significantly more stress preadmission than at any other
time. Contrary to our hypothesis that stress would be greatest just prior to
transplantation (day —7), stress decreased dramatically once the
pretransplant conditioning phase began. We believed that stress would be
amplified given that the conditioning phase depletes children's immune
functioning, often signaling a "point of no return." Perhaps
knowledge that the long-anticipated treatment had finally begun reduced stress
for those parents who had assumed primary caregiving responsibility. These
findings are consistent with results from previous BMT investigations, as well
as those focusing on solid organ transplantation
(Phipps et al., 1995 ;
Rodrigue et al., 1996).
Our second finding, that IN mothers reported the use of significantly more intervention techniques than SC mothers, suggests that the pilot intervention was successful in teaching parents strategies to manage stress. As we did not have an objective measure of whether the parents actually used the techniques, further validation of their effectiveness is needed.
The third main finding, that mothers' level of stress, in general, was not clinically different from that of normative samples, was surprising. There are at least two possible interpretations of this finding. First, the primary burden of care at the time of the child's BMT hospitalization shifts from mothers to the unit nurses and staff, which may provide a much needed respite and, perhaps paradoxically, stress reduction. Second, it is possible that the types of stressors encountered by mothers were not well detected by our outcome measures, or that floor effects affected our ability to detect such changes, high-lighting the need for more specific assessment tools.
In regard to the pilot of our intervention, stress did not differ
significantly between the intervention and standard care groups. Results may
have been significant with a larger sample or more specific outcome measures.
Other investigations with relatively small sample sizes of chronically ill
children and their parents have also failed to yield statistically significant
differences between intervention and control conditions for a variety of
reasons (Hoekstra-Weebers et al.,
1998 ; Kupst & Schulman,
1988 ; Robinson &
Kobayashi, 1991). Methodological challenges in our and others'
treatment outcome studies include randomization to standard care, relevance of
nonpediatric assessment tools (La Greca
& Lemanek, 1996), and lack of statistical power.
Even though parents' level of stress was not significantly different from that of normative samples, our finding of changes in stress over time still suggests that, as compared to the hospitalization portion of BMT, the preparation period can be intensive and stressful. For pediatric BMT, this finding further highlights the importance of pretransplant psychological assessments that occur a significant amount of time prior to the BMT admission, as well as the development, implementation, and evaluation of interventions aimed at assisting parents during the time of pretransplantation. Our pilot intervention did not specifically target handling preadmission stressors, such as beliefs about the upcoming transplant. In the future, we recommend that a modified intervention would be most beneficial to the extent that it (1) focuses on parents' preadmission stress (through use of cognitive-behavioral and family therapy techniques), (2) is administered several weeks preadmission, (3) continues in some capacity (e.g., weekly phone contact) throughout the preadmission process in order to encourage parents to utilize strategies, and (4) includes all possible caretakers (whenever possible), shifting the focus from maternal stress to that of the family. In addition to refining the intervention, designing situation-specific and psychometrically sound measures is an important next step. Continued documentation of parents' stress as it relates to pediatric BMT is also necessary to enhance our understanding of longer-term issues, such as adjustment to discharge, reintegration of the family and child into school and community settings, and survivorship.
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Acknowledgments |
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This article is based on Randi Streisand's doctoral dissertation, submitted to the University of Florida. The research was supported in part by awards from the Society of Pediatric Psychology, the Center for Pediatric Psychology and Family Studies at the University of Florida, and the Geoffrey Clark-Ryan Memorial Fund at the University of Florida. Portions of this research were presented at the 106th annual meeting of the American Psychological Association, San Francisco, California, August 1998. We thank Jennifer Blankenship, Teresa Broughton, Shoalay Jiang, Steve Judy, and Rachel Rafanan for their assistance with data collection and entry. We also thank Kenneth Tercyak and Anne Kazak for their assistance with earlier drafts of this manuscript.
Received December 1, 1998; accepted August 18, 1999
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