DISCUSSION
The purpose of the present study was to modify the delivery of BI to
caregivers of children with SCD in ways that would increase
accessibility and reduce stigma associated with receiving behavioral
health services. We anticipated that delivery modifications could
improve rates of recruitment and retention from previous attempts to
recruit caregivers of children with SCD for participation in
psychosocial research. With recruitment and delivery modifications
(described above), 94% of caregivers of children with SCD consented to
participate and 48.6 % completed 6+ sessions of face-to-face BI. These
rates of recruitment and retention were higher than those reported in
other studies of children with SCD suggesting that our strategies to
reduce barriers to participation were moderately successful for this
group of caregivers17.
We anticipated that caregivers of children with SCD who successfully
completed the BI program (6+ sessions), would report improvements in
problem-solving skills and lower levels of distress between T1 and T2
and also between T1 and T3. Based on our clinical experience and the
behavioral health literature regarding families of children with SCD
(i.e., minority, single parents, low SES), we initially believed these
caregivers would report below average levels of problem-solving skills
and considerable levels of distress at T1 due to the complexity of
caring for a child with SCD and challenges associated with being a
minority parent. Our data showed that caregivers of children with SCD
reported average levels of problem-solving skills and non-clinical
levels of distress at T1, T2, and T3.
While the majority of our sample of caregivers were low SES, single,
minority parents who were caring for a child with a severe, chronic
illness, our data suggested that these caregivers of children with SCD
experience characteristics of psychological hardiness that we did not
anticipate. We suspect our belief that caregivers of children with SCD
would report below average levels of problem-solving skills and higher
levels of distress, in comparison to other populations of caregivers,
may have been attributable to existing research demonstrating
significant levels of parenting stress and other psychosocial
challenges, as well as our own intrapersonal professional biases, as we
did not initially consider the possibility that caregivers of children
with SCD may have solid problem-solving skills and little evidence of
distress at baseline12,16,17,39,. Thus, T1 data from
the present study suggest that as a group, caregivers of children with
SCD who participated in this study have broadly average problem-solving
skills and they are experiencing non-clinical levels of distress.
Future research with caregivers of children with SCD might focus on
families who score within the targeted or clinical level for
psychosocial risk, which could be accomplished through comprehensive
screening efforts utilizing the Psychosocial Assessment Tool
(PAT)40. Prior investigations of the PAT with families
of children with SCD, demonstrated increased risk for parental stress
when the child with SCD did not have government health benefits, lower
caregiver education, more children residing within the home, and greater
financial difficulties40. Thus, identifying and
targeting caregivers for participation in BI, who report higher levels
of overall psychosocial risk on the PAT, may produce more robust results
with regards to the effectiveness of the intervention with this
population of caregivers.
Although we demonstrated successful recruitment of caregivers of
children with SCD, levels of retention in this study were modest. In
light of the rapidly evolving use of telehealth and iPhone/Android
application-based psychosocial intervention programs, researchers may
consider utilizing electronic mediums for disseminating BI-content.
However, recent work comparing face-to-face BI to BI provided entirely
via a website showed that face-to-face delivery was more
effective41. With consideration of these
findings41, future researchers may consider using the
website-BI program as an adjunct to face-to-face sessions in order to
further improve accessibility of the BI intervention for caregivers.
Our study had several limitations. First, our sample size of caregivers
of children with SCD was small and underpowered to detect small or
medium differences. Second, the study design did not include a control
group of caregivers of children with SCD who did not receive BI. Third,
although we recruited caregivers from two sites, it is possible that our
sample of caregivers is not representative of the larger population of
caregivers of children with SCD. Thus, future studies designed to
implement a psychosocial intervention with caregivers of children with
SCD, may benefit from collaborating with multiple sites (i.e., 3+),
similar to prior large-scale randomized controlled trials of BI in
pediatric oncology, to increase the sample size and thus statistical
power18,19,20. We also strongly recommend screening
caregivers, who report low levels of problem-solving skills and/or high
levels of distress, prior to delivery to ascertain those in highest
need.
In summary, data obtained from the present study provides limited
evidence to support further efforts in designing and conducting a
randomized control trial (RCT) of BI for this population of caregivers.
However, focusing future efforts on identifying caregivers with the
highest risk (i.e., low levels of problem-solving skills and high levels
of distress) based on screening and subsequently delivering BI may be of
clinical benefit.
Conflict of Interest Statement
Melissa A. Young, PsyD: No conflicts of interest to declare.
Megan Voll, LPC: No conflicts of interest to declare.
Robert B. Noll, PhD: No conflicts of interest to declare.
Diane L. Fairclough DrPH: No conflicts of interest to declare.
Cate Flanagan-Priore, PhD: No conflicts of interest to declare.
This work was supported by a grant to RBN from the National Center for
Advanced Translational Sciences Grant Number UL1 TR001857-02.
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Legends
TABLE 1 Demographic Characteristics of Participants (n = 60) and
their Spouses (n = 38)
TABLE 2 Comparison of Problem-Solving Skills Standard Score Changes at
Baseline (T1) to T2 and T1 to T3
TABLE 3 Comparison of Mood Disturbance T-score Changes at Baseline (T1)
to T2 and T1 to T3
TABLE 4 Comparison of Depression and Post-Traumatic Stress Symptoms Mean
and Standard Deviation Changes at Baseline (T1) to T2 and T1 to T3
Figure 1 Consort Diagram
Figure 2 Bright IDEAS Model