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Comprehensive Child and Adolescent Nursing

ISSN: 2469-4193 (Print) 2469-4207 (Online) Journal homepage: http://www.tandfonline.com/loi/icpn21

Depressive Symptoms in Parents of Children with


Spina Bifida: A Review of the Literature

Monique M. Ridosh PhD, RN, Kathleen J. Sawin PhD, CPNP-PC, FAAN, Bonita
P. Klein-Tasman PhD & Grayson N. Holmbeck PhD

To cite this article: Monique M. Ridosh PhD, RN, Kathleen J. Sawin PhD, CPNP-PC, FAAN,
Bonita P. Klein-Tasman PhD & Grayson N. Holmbeck PhD (2017): Depressive Symptoms in
Parents of Children with Spina Bifida: A Review of the Literature, Comprehensive Child and
Adolescent Nursing, DOI: 10.1080/24694193.2016.1273978

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Published online: 01 Feb 2017.

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COMPREHENSIVE CHILD AND ADOLESCENT NURSING
http://dx.doi.org/10.1080/24694193.2016.1273978

REVIEW

Depressive Symptoms in Parents of Children with Spina


Bifida: A Review of the Literature
Monique M. Ridosh, PhD, RNa, Kathleen J. Sawin, PhD, CPNP-PC, FAANb,
Bonita P. Klein-Tasman, PhDc, and Grayson N. Holmbeck, PhDd
a
Marcella Niehoff School of Nursing, Loyola University Chicago, Chicago, Illinois, USA; bSelf-Management
Science Center, College of Nursing, University of Wisconsin-Milwaukee and Children’s Hospital of
Wisconsin, Milwaukee, Wisconsin, USA; cDepartment of Psychology, University of Wisconsin–Milwaukee,
Milwaukee, Wisconsin, USA; dDepartment of Psychology, Loyola University Chicago, Chicago, Illinois, USA

ABSTRACT ARTICLE HISTORY


To review the literature on the prevalence of depressive symp- Received 5 October 2016
Accepted 17 November 2016
toms in parents of children with spina bifida (SB) and factors
related to these symptoms. A search was conducted using the KEYWORDS
major health databases (CINAHL, MEDLINE, and PsycINFO). Parent; depressive
Nineteen studies were identified that met inclusion and exclu- symptoms; child; spina
sion criteria. A context, process, and outcome framework was bifida; review
used to organize the findings. This review identified both: (a) a
high prevalence of parental depressive symptoms (PDS); and
(b) specific factors: demographics, condition, child, family func-
tioning, and parent factors that explained 32-67% of parent
depressive symptoms (PDS). Although contextual factors were
important, they alone were not sufficient to explain PDS.
Process factors accounted for more variance in PDS than con-
text factors. Findings warrant implementation of depression
screening in parents of children with spina bifida. This review
identified factors related to PDS and highlighted gaps in the
literature to guide future research.

Depression, a global public health issue, is a leading cause of disability affecting


an estimated 350 million individuals worldwide (Marcus et al., 2012). Parental
depression is a particularly disabling mental health outcome, as the impact can
be seen in the health of the parent, child, and family. Parents of children with a
chronic health condition (CHC), that requires a high level of parental care and
involvement, may be particularly at risk for parental depressive symptoms
(PDS). Spina bifida (SB), a complex CHC that has multisystem involvement, is
such a condition. Parents caring for a child with SB have “a long complicated
journey” (Sawin & Thompson, 2009, p. 284). This condition results from a
neural tube malformation during early stages of fetal development, often leading
to multiple neurological, orthopedic, urological, and functional impairments.
Parenting a child with SB may also include the challenges associated with the
child’s learning difficulties (i.e., impairments in working memory, numeral

CONTACT Monique Ridosh mridosh@luc.edu Loyola University Chicago, Marcella Niehoff School of
Nursing, 2160 S. First Avenue, 125-4534, Maywood, IL 60153.
© 2017 Taylor & Francis
2 M. M. RIDOSH ET AL.

literacy, verbal communication, and problem solving abilities). Significant


impact on independence and social integration can be critical issues for the
individual, family, and community across the life course.
Mental health outcomes have been a concern of investigators studying
families with SB for over 20 years. In the earlier literature, the focus was on a
broad concept, psychological distress (PDISS) defined as “the unique discom-
forting, emotional state experienced by an individual in response to a specific
stressor or demand that results in harm, either temporary or permanent, to the
person” (Ridner, 2004, p. 539). Characteristics of psychological distress include a
perceived inability to cope effectively, change in emotional status, discomfort,
communication of discomfort, and harm (Ridner, 2004). Whereas, more
recently, the literature identifies responses specifically as depressive symptoms
such as sadness, pessimism, loss of pleasure or interest, changes in sleep and
appetite, feelings of worthlessness, concentration difficulty, agitation and irrit-
ability affecting work, social relationships, and parenting (American Psychiatric
Association, 2013; England & Sim, 2009). PDS offers providers a more prag-
matic focus on symptoms for screening, evaluation, and treatment. Facilitating
this shift was the use of measures of depressive symptoms such as the Beck
Depression Inventory which is based on the DSM-IV criteria. Although a meta-
analysis summarizing the prevalence of PDISS and factors related to it was
published in 2005 (Vermaes, Janssens, Bosman, & Gerris, 2005), no review
specific to families with a child with SB has been conducted since the enhanced
focus on PDS. Factors associated with mental health outcome from the 2005
meta-analysis include parent gender, race, socio-economic status, parent educa-
tion level and employment, family income, condition severity, child behavior
and emotional problems, family environment, social support, marital quality
and support, parent stress and coping, parenting, and presence of partner. It is
important to determine if the prevalence of negative mental health outcomes
and the factors associated with these outcomes have changed since this shift in
focus to PDS.

Design and Methods


Primary research studies were located using the following steps. First, an initial
search was conducted with the CINAHL, MEDLINE, and PsycINFO databases
using combination of the keywords: “parent*,” “depress*,” and “spina*.” Inclusion
criteria were: published after 1990, English language, peer reviewed, and pertain-
ing to parent depression outcome and spina bifida. Search terms “myelo,” “dis-
tress,” and measures (BDI, CES-D, and SCL-90-R) did not yield any additional
articles. Of a total of 42 titles and abstracts screened, 19 articles met the inclusion
criteria. The PRISMA guidelines (Moher, Liberati, Tetzlaff, Altman, The PRISMA
Group, 2009) were used to report search strategy (see Figure 1).
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 3

Figure 1. Flow diagram of search strategy for review of literature on depression in parents of
children with spina bifida. Adapted from Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA
Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA
Statement. PLoS Med 6(6): e1000097. doi:10.1371/journal.pmed1000097.

This review included findings from 18 primary research studies and one
meta-analysis. Seven of 19 studies in the meta-analysis were included in the
current review as primary studies. The results of the meta-analysis are reported
separately. The meta-analysis addressed psychological adjustment, specifically
PDISS. All studies published before 2005, with the exception of King, King,
Rosenbaum, and Goffin (1999) (who examined both PDISS and PDS), used the
conceptualization of parental psychological distress (PDISS) and were consid-
ered “early,” while all papers published after the meta-analysis (Vermaes et al.,
2005) included findings related to parental depressive symptoms (PDS) and
were considered “later.”
The findings were organized by context and process factors. Context is
defined as the environment in which parental adaptation outcomes such as
PDS occur (i.e., demographic, condition factors, child factors). Process is defined
as the perceptions and activities that lead to parental adaptation outcomes (i.e.,
family functioning, parent factors). Two conceptual frameworks (CF), the
4 M. M. RIDOSH ET AL.

“Ecological Model of Secondary Conditions and Adaptation in SB” (Sawin,


Buran, Brei, & Fastenau, 2003) and the “Transactional Stress and Coping
Model (Thompson & Gustafson, 1996) provided the underpinnings for the
organization used in this review.
Although each approached health outcomes somewhat differently, both
organized variables into context, process, and outcome categories. The first
delineated context and process variables predicting adaptation outcomes
(physical health, mental health, and quality of life) in adolescents with SB.
The second, delineated factors related to two outcomes, maternal and child
adjustment, and indicated that a maternal outcome such as PDS may be
influenced by process variables. For this review, data were extracted from the
studies addressing PDS as an outcome and included study design, level of
evidence, sample, instruments, and findings in context and process cate-
gories. Further strengths and limitations of each study were identified and
summarized in the evidence table. The guidelines for appraisal of level of
evidence by Melnyk and Fineout-Overholt (2011) were used in this review,
with level I as the highest and level VII as the lowest (see Table 1).

Results and Discussion


Findings in this review are presented within the following domains: critical
appraisal of evidence, comparison of early and later studies, prevalence, and
factors related to depressive symptoms. Gaps in the literature are also
discussed. Context and process factors related to depressive symptoms are
summarized in Table 2 and Figure 2. Figure 2 includes the number of studies
that address each concept.

Critical Appraisal of Evidence


Design
All 19 studies were quantitative and about half of the studies (9) were single
descriptive correlational studies at level of evidence VI. Seven comparative
descriptive (2-group: group with SB and comparison) design studies were
conducted between 1992 and 2016 at level IV evidence. One was a longitudinal
study with a 2-year lag between time points allowing for comparison of factors
across time (Friedman, Holmbeck, Jandasek, Zukerman, & Abad, 2004). One
quasi-experimental study, Ok & Kurzrock (2011), the only intervention study
for impact of surgical procedure of bowel care management on quality of life,
was at level III evidence. One study, the meta-analysis, was at the highest level of
evidence I. While the meta-analysis was a stronger design, it was limited by the
small number of studies included and lack of conceptual homogeneity among
variables used to calculate effect sizes. The evidence in the depressive symptoms
literature was descriptive of factors associated with, but not causal of, PDS.
Table 1. Depression in Parents of Children with Spina Bifida
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Early studies—
before 2005
Kronenberger, W. social 2 mo–18 yrs. Correlational Symptom a. -almost ½ sample (n = 29; 44%) met Weakness –
G., & Thompson, relationships; N = 66 Correlation & Checklist-90- criteria for poor psychological Correlational design does not allow for
R. J., J. (1992a). marital quality/ mothers regression Revised (SCL-90- adjustment testing of causation. Self-report data from
Level of evidence support, social U.S. – South R)a b. 50% variance psychological adjustment mother’s perspective.
VI support, & social Clinic psychological Context
coping distress Demographic - Mother's race (R2 = .22)
association with Process
psychological Family functioning - marital quality/
adjustment of support (Dyadic Adjustment Scale (DAS)
mothers of total score) & controlling family
children with SB environment (Family Environment
subscale (FES)
Other bivariate findings:-
-FES related to outcome (support factor
strongest, r = -.51, p < .001)
-Friend coping related to outcome (r = .39, p
< .01) (more emotional regulation using
friends)
(Continued )
COMPREHENSIVE CHILD AND ADOLESCENT NURSING
5
6

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Barakat, L. P., & relationships of 6–11 yrs. 2-group Brief Symptom a. No group differences in regression Weakness –
M. M. RIDOSH ET AL.

Linney, J. A. social support & 29 mothers design Inventory b results of social support variables related to Maternal psychological adjustment had
(1992). maternal & 9 fathers correlations, psychological outcome (maternal adjustment) little variance and positive skew—variable
‡ psychological SB group & multiple distress b. 42% variance psychological adjustment was transformed with square root of
Level of evidence adjustment 28 mothers regression (SB group) (no significant factors for value
IV & 7 fathers comparison group) Groups differed significantly on SES,
comparison Context – none entered in regression parent education, race (SB group 3% and
group Process comparison 36% ethnic minority), child
U.S.- Family functioning - Social support PPVT-R score and child classroom
Midwest factors – Available network (R2 Δ = .24); placement
Clinic number of family members (R2 Δ= .21);
support satisfaction (R2 Δ = .17)
Other findings:-baseline group differences
related to SES, parent education, race,
child PPVT-R score, and child classroom
placement-other group difference
related to child adjustment: SB group
lower self-concept &adaptive behavior
-comparison group maternal
adjustment related to internalizing
behavior problems (r = -.60)
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Kronenberger, W. stress appraisals 2 mo–18 yrs. correlational Symptom a. almost ½ sample (n = 29; 44%) met criteria Weakness –
G., & Thompson, relationship to 66 mothers correlations, Checklist-90- for poor psychological adjustment Variable selected for severity of illness to
R. J. (1992b). medical severity U.S. - South regression Revised (SCL-90- b. 32% variance psychological adjustment place in regression model was number of
Level of evidence & stress related Clinic R)a Context shunts, which was 2.8 - low, may not be
VI to psychological Demographic - mother’s race (R2 = .17); generalizable.
psychological distress Process Same data as 1990 and different process
adjustment Parent factor - Parent perceived stress factors led to less variability in results.
(appraised stress of the child’s medical
condition) (R2 = .32); (R2 Δ 0.15)
Other findings: -psychological adjustment
related to appraised stress (stress items
were child medical stress, mother's
emotional response to stress, and
stressfulness of other life crises
-child/medical stress r = .39, p < .01 & social/
non-child stress r = .26 p < .05.
(Continued )
COMPREHENSIVE CHILD AND ADOLESCENT NURSING
7
8

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Barakat, L. P., & relationships of 6–11 yrs. 33 2-group Brief Symptom a. No group differences in regression Weakness –
Linney, J. A. coping families SB design Inventory (BSI)b results of social support variables related to Authors reported maternal psychological
M. M. RIDOSH ET AL.

(1995). resources & group; Regression psychological outcome (maternal adjustment) adjustment had little variance and
‡ maternal & 29 distress b. 67% variance maternal psychological positive skew—variable was transformed
Level of evidence child comparison adjustment (SB group) with square root of value
IV adjustment group Context (R2 = .20) Groups differed significantly on SES,
maternal U.S. – Demographics - PPVT-R, SES, race parent education, race (SB group 3% and
psychological Midwest Process—Parent factor - Parent coping comparison 36% ethnic minority), child
adjustment Clinic (avoidant coping, problem-focused, PPVT-R score and child classroom
emotion-focused); (avoidant coping placement.
alone explained 47% of variance) – total
of 3 forms coping & context factors
(R2 = .67)
Other findings: 44% variance maternal
psychological adjustment in comparison
group
Context -Demographics - PPVT-R, SES, race
Process—Parent factor - Parent coping
(avoidant coping, problem-focused,
emotion-focused); (avoidant coping
alone explained 12% of variance) – total
of 3 forms coping and context factors
(R2 = .44)
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Holmbeck, G. N., Examination of 8–9 yrs. 2 group Symptom a. 19.2% mothers and 25.6% fathers met Comparison sample was matched.
Gorey-Ferguson, parents of 55 SB group design Checklist-90- criteria in SB group and 11.1% mothers &
L., Hudson, T., children with & 55 child MANOVAs for Revised (SCL-90- 16.3% fathers met criteria in comparison
Seefeldt, T., SB across areas matched group R)a and Global for psychological symptoms.
Shapera, W., of functioning comparison differences, Severity Index b. Group difference factors in psychological
Turner, T., & (individual, group, SCL-90-R, (GSI) adjustment
Uhler, J. (1997). parental, and 51 mobility Chi-square psychological Context
‡ marital) & limited, 74% for symptoms Demographic - Parent gender group
Level of evidence predictors of in 2 parent differences differences, fathers reported more PDS
IV parental family between Process
adjustment in U.S. – groups Parent factors - ↓ Parental satisfaction
family with or Midwest (father & mother)
without child clinic ↓ Parental Mastery (competence) (mother)
with SB. Parent factors - ↑ Parent perceived stress
(mother & father), role restriction (father &
mother), social isolation (mother)
Parent coping (mother) behavioral
disengagement (positive) & adaptability to
change (negative);
(father) behavioral disengagement
(positive) and focus on venting of emotions
(positive)
Other findings:
Outcome
PDS - (psychological adjustment)
↑ Psychological symptoms (father)
No differences in psychological symptoms
COMPREHENSIVE CHILD AND ADOLESCENT NURSING

between parents of CHC and comparison


for mothers
No moderating effect of group between
9

coping and psychological adjustment.


(Continued )
10

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
King, G., King, S., Factors 3–5 yrs, descriptive Symptom a. Incidence of PDS not reported. Strength –
Rosenbaum, P., & predicting N = 164 SEM Checklist-90- b. Structural model – parent (emotional) Theoretically based study with large
Goffin, R. (1999). parent well- parents Revised (SCL-90- wellbeing multi-site sample
M. M. RIDOSH ET AL.

Level of evidence being (3 Canada R)a – Context Weakness-


VI indicators (multi-site 6 psychological Child factor - Child behavior problems While model identifies and aims to test
above) parent clinics) distress (.60 path coefficient) mediator variables, results do not
emotional Centre for Process explicitly explain mediational
well-being. Epidemiological Family functioning - Social-ecological relationships.
Studies factors (family functioning, satisfaction
Depression social support) (.23 path coefficient);
Scale (CES-D)d - family centered caregiving (-.13 path
depressive coefficient)
symptoms Adequate goodness of fit
Stress χ2 (309) = 634.09, p <01; RMSEA = .08;
One-time TLI = .83; RNI =.85
measure
Likert 0–5
(degree
caregiving by
center affected
stress and worry
in caring for
child in past
year or less)
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Lemanek, K. L., differences in 3–16 yrs. descriptive & Symptom a. PDS - no differences in maternal rating Weakness-
Jones, M. L., & parent n = 59 comparative Checklist-90- of psychological distress when compared Sampling bias – parents white (93.2%) &
Lieberman, B. adaptation & mothers t-tests, Revised (SCL-90- to norms. Mothers psychological distress mother’s SES middle income
(2000). condition n = 19 for correlations, R)a lower than fathers but within normal range
Level of evidence within SB comparative ANCOVA, psychological b. Correlations with maternal psychological
VI compared to data of paired distress distress
norm; mother & comparisons Context
psychological father Child factor -↑ child problem behavior
distress 2 U.S. clinics/ (r = .41)
regional Process
medical Parent factors –
centers, ↓ parenting competence & satisfaction
region not combined
specified (r = -0.51); ↓ parent satisfaction (r = -.58),
↓ parenting competence (r = -.26)
Other findings: main effect of SB condition
severity (F(3, 45) = 5.11 p <.01) on child
problem behaviors found between mild
and moderate severity of condition but not
severe
(Continued )
COMPREHENSIVE CHILD AND ADOLESCENT NURSING
11
12

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Friedman, D., Longitudinal 8–9 yrs. 2-group Symptom a. 19.2% mothers and 25.6% of fathers met Strength –
Holmbeck, G. N., examination of 68 SB group; design Checklist-90- criteria (GSI) for severity of psychosocial longitudinal and comparison sample
Jandasek, B., child 68 hierarchical Revised (SCL-90- functioning with one significant group matched
M. M. RIDOSH ET AL.

Zukerman, J., & adjustment and comparison regression R)a difference (group status and parent Weakness –
Abad, M. (2004). parent group analyses psychological functioning). parent functioning measure composite
‡ functioning U.S. - distress b.Correlations between condition, child and difficult to compare across studies
Level of evidence psychosocial Midwest adjustment and parent adjustment (parent
IV functioning Clinic functioning)
and child Context
adjustment. Condition (SB group)
(Parent SB group X child externalizing symptoms
functioning b = .229 (time 2) (paternal)
domains were Child factor - behavior problems
parenting child internalizing symptoms,
stress, (time 2) (maternal)
individual child externalizing symptoms
psychosocial (time 1) (maternal)
adjustment, (time 1) (paternal)
and marital Outcome
satisfaction) A change in PDS (Parent functioning of
mother and father) is significant from
time 1 to time 2 and significantly
related to child adjustment (time 1 & 2)

(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Hobdell, E. (2004). describe 6 months–6 descriptive Brief Symptom a. 14% of parents met criteria for caseness of Weakness -
Level of evidence parental chronic yrs. ANOVA Inventory (BSI)b PDS positive skew, log 10 transformations
VI sorrow N = 63 psychological b. Correlation of parent depression/ chronic reduced skew to non-significant levels;
following birth mother- distress sorrow
of child with father pairs Process
NTD & explore U.S. - Parent factor – 2 measures of chronic
relationship 2 tertiary sorrow (current)
between care fathers r = .34; r =- .49
chronic sorrow pediatric mothers r = .22; r = - .30
& depression hospitals, Other findings:
region not -86% parents experience chronic sorrow,
reported mothers more sorrow than fathers
(Continued )
COMPREHENSIVE CHILD AND ADOLESCENT NURSING
13
14

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Vermaes, I. P., Do parents of This article Weighted Brief Symptom a. psychological adjustment – parent Strength –
Janssens, J. M., children with reviewed 33 average Inventory (BSI) gender and parent status had medium to Cohen’s Kappa is reported for process of
Bosman, A. M., & SB have more studies and effect sizes (4 studies)b; large effect size (0.73 standard deviations identification of studies (.82 - .92)
Gerris, J. R. psychological included 15 calculated General health more mothers of children with SB than Weakness –
(2005). distress than in meta- based on two Questionnaire comparison had psychological distress; Review based on condition effect on
Level of evidence controls? Do analysis or more (GHQ) (1 study); parents of children with SB had 0.76 “adjustment” or “adaptation”. These key
M. M. RIDOSH ET AL.

I mothers and portion of studies; One Symptom Check standard deviations more psychological words were included in search strategy
fathers differ? the review. to four List-90R (SCL- distress than comparison). versus inclusion of “depress*” in this lit
Which factors articles 90R) (5 studies)a b. Effect size results review. Parents’ psychological adjustment
correlate with supported psychological Context- is defined as “the adaptive task of
variations in factors distress Demographic - ↓ socio-economic (race, managing upsetting feelings aroused by
psychological related to Malaise SES; parent education level & the illness of the child and preserving a
adjustment? parental Inventory (4 employment) (r = - 0.13); ↑ parent reasonable emotional balance” (p. 2). This
adjustment. studies); gender (mother) – d+ = 0.73; definition is inconsistent with
When one Langner ↓ family income (r = - 0.22); psychological distress and presence or
study Symptom Condition - ↑ severity – (r = 0.14) severity of depressive symptoms.
available Checklist (1 Child factors - ↑ child behavior problems Critical appraisal of the quality of the
then study)/ (r = 0.37); ↑ child emotional problems primary studies was not reported.
correlation psychological (r = 0.47) Duplication of samples used to calculate
coefficient and physical Process – effect sizes may have introduced error.
was reported. symptoms Family Functioning - ↓ Positive family A small number of studies per concept
environment (r = - 0.42), ↓ quantity were used to calculate effect size mostly
social support (r = - 0.28); ↓ satisfaction 2-3. Pooled factors were categorized from
social support (r = - 0.28); ↓ marital a variety of variables-conceptually
quality & support (r = - 0.40) inconsistent.
Parent factors - ↑ Parent stress (r = 0.63); Outcome measures were conceptually
↑ parent coping (r = 0.38); ↓ parenting inconsistent.
satisfaction & parental competence
(r = - 0.41); ↓ presence of partner
(r = - 0.16)
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Later
studies -
after 2005
Grosse, S., Flores, A., Compare time 0–17 yrs. 2-group 2 questions a. PDS - 32% caregiver of children with SB Strength – SB group was recruited from a
Ouyang, L., use, health, and n = 98 SB design adapted from vs. 12% comparison group reported feeling population-based registry of birth defects
Robbins, J., & well-being of group Comparison SF-36 about blue more than a little of the time, Weakness -
Tilford, J. (2009). caregivers with n = 49 group by depressive b. Group differences on factors related to Sample not matched. - Comparison group
‡ child/ comparison referral with symptoms PDS was not representative of population.
Level of evidence adolescent with group 68% Quality of Well- Context —SB group child older by about 2 years
IV SB; compare U.S. – response rate Being scale - Demographic – child age (< 6 years) and caregivers older by about 3 years;
with parents of Arkansas Pearson's Chi preference- Condition - severity - lesion –39% college level of education of
comparison population square test; t- weighted level – highest with higher lumbar children in comparison group was about
group children based test; linear health-related Process double the SB children's group;
accounting for registry regression quality of life. Parent factor - leisure days (1 or no days) –% married in comparison group was
level of lesion. analysis; Outcome 91.8%, 77.6% in SB group. Reliability of
mental health logistic Group differences from regression the 2-items from the SF-36 is unknown.
outcomes regression PDS significant in sacral and high lumbar
SB group vs. comparison group
Other findings:
-quality of wellbeing score of SB group
(high lumbar group of SB group was
significantly lower than comparison
group.
-poor health significant in caregivers of
young children (ages 0-6)
COMPREHENSIVE CHILD AND ADOLESCENT NURSING

(Continued )
15
16

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Ok, J., & Kurzrock, E. Evaluate impact median age descriptive, Fecal a. Incidence of PDS not reported. Strength - comparative based on 2 times
M. M. RIDOSH ET AL.

A. (2011). of ACE surgery 11 yrs. comparative incontinence b. Differences between pre-test and post-test of data collection
Level of evidence on N = 23 pre and post- and Context Weakness –
III ● QOL families; surgery constipation on Condition (child) small sample
● Child analysis on paired quality of life ↑ Sensation & bowel movements no intention to treat analysis
Experience 18 analysis survey (FICQOL into toilet from 45% to 97%.
● Impact on completed (Wilcoxon survey)i ↓ Accidents from 3.9 to 0.3 per week.
family pre and signed rank depressive ↓ abdominal pain from constipation
● Social inter- post-surgery test) symptoms ↓ Laxative from 44% to 6%.
action surveys; Process (parent)
Mental 72% Parent factor – leisure (travel and
health Caucasian socialization); ↓ bother or anxiety
(anxiety, U.S. – West of leaving the house
depression, Clinic Outcome (parent)
worry, & PDS - caregiver support & emotional
bother) impact
↓ caretaker anxiety, depression,
worry & bother
Other findings:
Total time for bowel care 45 min.
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Devine, K. A., Evaluate Mean age Descriptive Symptom a. psychological symptoms mean 0.40 Strength was inclusion fathers and
Holbein, C. E., differences in Hispanic ANCOVA Checklist-90- (0.48) Hispanic mothers, 0.30 (0.28) non- analysis for differences in ethnicity.
Psihogios, A. M., individual 11.97 (2.38) Revised (SCL-90- Hispanic mothers, 0.24 (0.22) Hispanic
Amaro, C. M., & adjustment, Non- R)a and Global fathers, 0.28 (0.25) non-Hispanic fathers.
Holmbeck, G. N. parental Hispanic Severity Index Individual adjustment (psychological
(2012). functioning, White 11.38 (GSI) symptoms). No significant differences
Level of evidence and perceived (2.35) psychological between groups (Hispanic and non-
VI social support N = 140 symptoms Hispanic) with and without covariate of
between families SES. (child age and IQ are covariates in
Hispanic and N = Hispanic analyses).
non-Hispanic 32 children, Other findings:
White mothers 29 mothers, Significant Hispanic and non-Hispanic
and fathers of 26 fathers group differences in family SES and
children with Non- child intelligence scores.
spina bifida Hispanic For mothers, group difference in parent
White n = 71 functioning (parenting satisfaction,
children, perceived competence, and perceived
79 mothers, child vulnerability) with and without SES
68 fathers as covariate. Perceived social support
Midwest U.S. (family support and friend support) was
– significant without SES included, not
4 hospitals when SES was included.
and For fathers, group difference in parent
statewide functioning (parenting satisfaction)
spina bifida with and without SES as covariate.
association Parent functioning (perceived child
vulnerability) significant without SES
COMPREHENSIVE CHILD AND ADOLESCENT NURSING

included.
(Continued )
17
18

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Valença, M. P., de Investigate 0–15 yrs. descriptive Medical a. 44.2% mothers considered depressive Weakness –
Menezes, T. A., burden, QOL, M 6.2 (4.3) t-tests/ Outcomes Study (BDI greater than or equal to 10); selection bias issue
M. M. RIDOSH ET AL.

Calado, A. A., & anxiety and N = 43 Mann- Short Form-36 b. Correlation with depressive symptoms correlation coefficients not reported
de Aguiar depressive caregivers Whitney U survey (SF-36)e Context
Cavalcanti, G. symptoms of Brazil test; Caregiver Condition
(2012). caregivers Clinic Pearson's r Burden Scale SB with severe motor impairment
Level of evidence coefficient & (CBS)h (67%), sensitivity impairment (95.3%),
VI Spearman's r Beck Depression & fecal incontinence (48.8%)
coefficient; Inventory (BDI)c Process
ordinary least depressive Parent factor – stress -Caregiver burden
squares symptoms (CBS)– positive correlation (except
estimation/ Beck Anxiety emotional involvement dimension)
Heckman Inventory (BAI)f and anxiety (BAI)
method Outcome
PDS - SF-36 (pain, gen health, vitality,
social functioning, & mental health) –
negative correlation
Other findings-fecal incontinence, low
income, unemployment, and living
with partner related to caregiver burden
SES - Caregiver unemployed 74.4%
and living with a partner
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Ulus et al. (2012) evaluate impact 7m–12 yrs. Descriptive Beck Depression a. PDS - mean BDI scores 13.3 (7.52) Weakness –
Level of evidence of functional M 4.35 yrs. Multivariate Inventory (BDI)c mothers; 8.2 (5.48) fathers Parents, who were divorced, separated, or
VI disability on Median 39 linear depressive b. Correlation with depressive symptoms had psychiatric disorders were excluded
parent months regression symptoms Context from the study, which may limit external
psychological n = 54 analysis/ Demographic - parent gender -mothers validity of results. All mothers were
status and mothers and Univariate significantly higher in depressive unemployed and 55% fathers were
family 54 fathers of analysis/ symptoms than fathers government officials.
functioning children with Student t-test Process All children had lumbar lesion level
SB Family functioning – role (mother); Inconsistency in test and table results
Turkey problem solving and behavioral concerning father general functioning or
control (father) behavioral control as the significant
Other findings: factor.
-no difference between groups in
receiving news of SB diagnosis during
pregnancy on depressive symptoms
outcomes
-no difference between groups
in number of children in families and
depressive symptoms
(Continued )
COMPREHENSIVE CHILD AND ADOLESCENT NURSING
19
20

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Brei, T., J., Examine 12–21 yrs. descriptive Generalized a. 48% of parents depressive symptoms small sample
Woodrome, S. E., relationship of N = 50 Correlation, Contentment b.57% of variance in PDS
Fastenau, P. S., risk and parent and Hierarchical Scale (GCS)g Context
M. M. RIDOSH ET AL.

Sawin, K. J., & protective AYA Multiple depressive Child factor


Buran, C. F. (2014) factors and U.S. – Regression symptoms Neuropsychological functioning
Level of evidence PDS. Midwest (Mental processing, attention, oculomo-
VI tor skills, & executive function) (r = .26
-.46) negative correlation (strongest is
executive functioning)
Process
Family functioning - family protective
factors (family cohesion, family satisfac-
tion, family resources (mastery and
esteem)) (r = .40 - .76) negative corre-
lation (strongest is family satisfaction);
*Composite of NP functioning and
family protective factor
Other findings:
mean normal IQ,
-NP measures .75 - 1 SD less than norm;
No moderating effect of family func-
tioning between NP functioning and
depressive symptoms.

(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Civilibal, M., Suman, Assess the 4–6 yrs. Descriptive Medical a. PDS - mean BDI scores 28.6 (8.9) group Divorced/separated women were not
M., Elevli, M., & quality of life N = 30 Student’s t- Outcomes Study with SB; 8.4 (6.1) group without SB. Mental included in study; small sample.
Duru, N. S. (2014). and parents of test, Mann- Short Form-36 Health scale of SF36 mean score 80.5 (8.2)
‡ psychological child with SB Whitney U- survey (SF-36)e group with SB and 85.6 (7.3) group without
Level of evidence status of with test, and the Beck Depression SB
IV mothers of neurogenic Chi-square Inventory (BDI)c b. Correlation with depressive symptoms
children with bladder test depressive Context
SB N = 30 symptoms Condition (SB group)
parent with Other findings: No group
child differences on demographic or
without SB socioeconomic status.
Turkey No correlation of depressive symptoms
with child’s age, sex, number of siblings
or mother’s age. QOL scores of SF-36
significantly lower in group with
SB (except in social functioning and
mental health dimensions)
(Continued )
COMPREHENSIVE CHILD AND ADOLESCENT NURSING
21
22

Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Malm-Buatsi, E., Examine 1–23 yrs. descriptive Beck Depression a. Parents of children with SB with shunts Small sample size
M. M. RIDOSH ET AL.

Aston, C. E., Ryan, associations N = 84 Generalized Inventory (BDI)c were more depressed than those with
J., Tao, Y., Palmer, between parents of Linear Model depressive children without shunts (10.2 vs 4.5)
B. W., Kropp, B. P., anxiety, children with for group symptoms b. Correlation with depressive symptoms
… & Frimberger, depression, and SB (50 differences Context
D. (2015). parenting mothers, 34 Demographic – race, age of parent,
Level of evidence variables in fathers, 51 marital status; mother at home (father)
VI caregivers of families) Condition – level of lesion & presence
youth with N = 34 of shunt
spina bifida and Comparison Other findings: 20% of the parents
how they relate group of participated in a recreational activity
to demographic non- program. Only difference reported
and disease participants was lower parental protective score
variables with spina (24.0 vs. 32.4, specifically mothers
bifida were (21.5 vs. 32.0) No other differences were
obtained reported between families that
from medical participated in the program and
records those who did not.
U.S. –
Oklahoma
(Continued )
Table 1. (Continued).
Author(s), Year, & Research Sample & Design & Instrument/
Level of evidence question Location Analysis Concept Relevant Findings Strengths/Limitations
Ridosh, M., Sawin, K. Explore factors AYA age - Descriptive Beck Depression a. 22% parents of AYA with SB had Strength - a-priori sample size calculation
J., Schiffman, R. that have direct 12–25 yrs. Hierarchical Inventory (BDI)c depressive symptoms, 14% parents of determined adequate power
F., & Klein- and/or indirect N = 209 Multiple depressive AYA without SB had depressive symp- Weakness - secondary analysis
Tasman, B. (2016) relationships n = 112 Regression, & symptoms toms; predetermined sampling method and size
‡ with PDS and parents with Mediation PDS - mean BDI scores 7.98 (7.75) total
Level of evidence FQOL in families AYA with SB analysis sample; subsample with SB 9.11 (8.67);
IV who have an and 97 subsample without SB 6.67 (6.33)
AYA with and parents with b. 38% of variance in PDS
without SB AYA without Context
SB Income
U.S. – Process
Midwest Family functioning - family
resources
Parent factor - parent stress
Other findings:
- Income significantly different
by subsample. *χ 2 (207) = 16.67,
p < .001;
Depressive symptoms partially
mediated the relationship of family
resources and FQOL. Sobel test
result (z = 4.56, p < .001).

Note. Findings are significant at p ≤ .05 unless otherwise specified. ‡ 2-group studies. Levels of evidence are I systematic review/meta-analysis; II randomized controlled trials; III
controlled trials without randomization; IV case-control/cohort studies; V systematic reviews of descriptive studies; VI single descriptive study; VII opinion of authorities or reports
of expert committees (Melnyk & Fineout-Overholt, 2011). a. Symptom Checklist-90-Revised (SCL-90-R) – measures current psychological distress (90 items) using Likert 0-4 scale.
9 symptom dimensions: *Somatization, Obsessive-compulsive, Interpersonal sensitivity, *Depression, *Anxiety, Hostility, Phobic anxiety, Paranoid ideation, Psychoticism. *Global
Severity Index (GSI) – overall psychological distress level (sum of score for all items/number of items answered). b. Brief Symptom Inventory b (Short form developed from
Symptom Checklist-90-Revised) (53 items) using Likert 0-5 scale Measures psychological distress. 9 symptom dimensions: Somatization, Obsessive-compulsive, Interpersonal
sensitivity, Depression, Anxiety, Hostility, Phobic anxiety, Paranoid ideation, Psychoticism. Global Severity Index (GSI)-overall psychological distress level. c. Beck Depression
COMPREHENSIVE CHILD AND ADOLESCENT NURSING

Inventory (BDI) 21 categories of symptoms measures behavioral manifestation of depression. d. Centre for Epidemiological Studies Depression Scale (CES-D) (20 item) – measures
frequency & duration of cognitive, affective and behavioral symptoms. e. Medical Outcomes Study Short Form-36 survey (SF-36) (36-item) measures Quality of Life one of 8
domains measures mental health. f. Beck Anxiety Inventory (BAI) 21 symptoms measures common symptoms of anxiety. g. Generalized Contentment Scale (GCS) (25 item)
23

measures degree, severity, magnitude of non-psychotic depressive symptoms. h. Caregiver Burden Scale (CBS) (22-item) measures one of 5 dimensions measures emotional
involvement. i. Fecal incontinence and constipation on quality of life survey (FICQOL survey) (51 item) measures aspects of daily life when bowel incontinence & bowel care have
significant impact subscale 8-items on caregiver support & emotional impact measured depressive symptoms.
24

Table 2. Summary of depression prevalence in parents of children with SB, contextual factors and process factors variable related to PDS
Context Process
Author (year) Prevalence Dem Condition Child Factors Family Functioning Parent Factors
Kronenberger & Thompson 44% mothers race family environment
(1992a) (controlling); marital quality/
support
Kronenberger & Thompson 44% mothers Race parent stress (condition)
M. M. RIDOSH ET AL.

(1992b)
Hobdell (2004) 14% parents chronic sorrow
Barakat & Linney (1992)‡ race, SES receptive social support & support
language satisfaction
Barakat & Linney (1995)‡ race, SES receptive parent coping
language (avoidant)
Holmbeck et al., (1997)‡ 19.2% mothers/CHC; parent gender condition presence parenting (competence,
11.1% mothers/no CHC; (SB) role restriction,
25.6% fathers/ satisfaction, social
CHC;16.3% fathers/no isolation);
CHC parent coping
(behavioral
disengagement/
adaptability to change
& venting emotions);
stress
King et al. (1999) child behavior family cohesion; social
problems support, support satisfaction,
family centered caregiving
Lemanek et al., (2000) child behavior parenting (competence
problems & satisfaction)
Friedman et al., (2004)‡ 19.2% mothers; 25.6% condition presence child behavior
fathers (SB) problems
(Continued )
Table 2. (Continued).
Context Process
Author (year) Prevalence Dem Condition Child Factors Family Functioning Parent Factors
Vermaes et al., (2005) parent gender; race; condition severity child behavior family environment (positive), parent stress; parent
SES; parent education problems quantity social support; coping; parenting
level & employment; child satisfaction social support; (competence &
family income; emotional marital quality & support satisfaction); presence
problems of partner
Grosse et al., (2009)‡ 32% parents/CHC; 12% child age condition presence & leisure (days)
no CHC severity (lesion level)
Ok & Kurzrock (2011) condition severity, leisure (travel &
(sensation & BM socialization/leaving the
accidents, pain, house)
laxative)
Valença et al., (2012) 44.2% mothers SES condition severity caregiver burden &
(severe motor anxiety
impairment,
sensitivity, fecal
incontinence)
Ulus et al. (2012) parent gender family functioning – role
(mother); problem solving
(father); behavioral control
(father)
Brei et al., (2014) 48% parents neuro- family cohesion, family
psychological satisfaction, family resources
functioning
Civilibal et al., (2014) condition presence
(SB)
Malm-Buatsi et al., (2015) race, parent age, condition severity
marital status, mother (level of lesion &
COMPREHENSIVE CHILD AND ADOLESCENT NURSING

at home (for father) presence of shunt)


Ridosh et al., (2016) 22% parents of AYA Income family resources parent stress
with SB; 14 % parents of
AYA without SB
25

Note. Devine et al., 2012 was omitted from this table since factors were not significantly different on psychological symptoms by group (Hispanic and non-Hispanic).
26 M. M. RIDOSH ET AL.

Figure 2. Factors related to PDS Identified in the literature synthesis. Only significant contextual
and process findings are reported (p < .05). Number of studies evaluating concepts are identified.

Sample and Location


The external validity of these studies was limited by small sample sizes and
sampling methods. Total sample sizes ranged from 23–209 participants. Several
studies had multiple reports using the same sample to address different research
questions (Barakat & Linney, 1992; Barakat & Linney, 1995; Friedman et al.,
2004; Holmbeck et al., 1997; Kronenberger & Thompson, 1992a, 1992b).
Adequate sampling method was evident in Friedman et al. (2004) and
Holmbeck et al. (1997) studies using same sample. Specifically, the similarity
of SB and comparison groups in sample was due to the recruitment method.
Investigators contacted schools where participants with SB attended to recruit
matched comparison families, thus increasing the likelihood of similar race,
ethnicity, SES, and age. Recruitment strategies that did not result in matched
samples included those from pediatric clinics, childcare centers, newspaper
advertisements, custodial services of local university, and referral from partici-
pants (Barakat & Linney 1992; Barakat & Linney 1995; Grosse, Flores, Ouyang,
Robbins, & Tilford, 2009). Overall, this latter group of level IV comparison
studies was weak due to poorly matched groups in sample (see Table 1 for
characteristics of samples) and results relating to group differences should be
interpreted with caution.
When racial distribution of the sample was reported, the samples were
primarily White (78–94%) (Brei, Woodrome, Fastenau, Buran, & Sawin, 2014;
Gross et al., 2009; Holmbeck et al., 1997; Kronenberger & Thompson, 1992a,
1992b; Lemanek, Jones, & Lieberman, 2000; Malm-Buatsi et al., 2015; Ok &
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 27

Kurzrock, 2011; Ridosh, Sawin, Schiffman, & Klein-Tasman, 2016). Up to seven


percent of participants were Black (Barakat & Linney 1992; Barakat & Linney
1995; Gross et al., 2009; Kronenberger & Thompson, 1992a, 1992b; Malm-Bautsi
et al., 2015; Ridosh et al., 2016; Valença, de Menezes, Calado, & de Aguiar
Cavalcanti, 2012), one exception was a sample which included a comparison
group with 36% Black participants (Barakat & Linney 1992; Barakat & Linney
1995). Several studies did not report race or ethnicity (Civilibal, Suman, Elevli, &
Duru, 2014; Hobdell, 2004; King et al., 1999; Ulus et al., 2012). Ethnicity was only
reported in a few studies with 4–10% of participants identified as Hispanic
(Malm-Buatsi et al., 2015; Ridosh et al., 2016) and only one study specifically
evaluated findings based on Hispanic ethnicity (Devine, Holbein, Psihogios,
Amaro, & Holmbeck, 2012). Study samples lacked diversity and findings may
not be generalized to non-Whites.
The international range of evidence in this review was broad. Although about
half of the studies were conducted in samples from the Midwestern region of the
United States, locations of participants included Southern (Kronenberger &
Thompson, 1992a, 1992b) and Western (Ok & Kurzrock, 2011) regions. Two
studies were conducted in specific states, Arkansas (Gross et al., 2009) and
Oklahoma (Malm-Buatsi et al., 2015), while two studies did not specify the location
of the U.S. region. Other sample locations included Brazil (Valença et al., 2012),
Turkey (Civilibal et al., 2014; Ulus et al., 2012), and one multi-site study across six
clinics in Canada (King et al., 1999). See Table 1 for sample and location.
This body of literature was mostly limited to data from one informant,
mother’s report. Five studies specifically report both mother and father data to
evaluate differences between gender of parents (Devine et al., 2012; Hobdell,
2004; Lemanek et al., 2000; Malm-Buatsi et al., 2015; Ulus et al., 2012). Most
studies have age variability in the group of children with SB and only one
study included a limited age range of 4 to 6 year old children (Civilibal et al.,
2014). Since almost half of the studies had mixed age samples ranging from
infant to young adult, the conclusions by age must be interpreted with caution.
Child age or developmental stage variables (i.e., school age or adolescent) may
better explain parent outcomes in future studies.
The majority of comparison studies had samples that were not consistently
matched on age, gender, race, or income, potentially contributing to significant
group differences. This review also found variability in reporting indices of
condition severity that made it difficult to reach a conclusion regarding differ-
ences between lesion levels. Use of the term “parent” may have limited the ability
to identify studies of caregivers of children more broadly, although preliminary
review of “caregiver” literature was related to those with adult dependents.

Data Analysis
Studies tended to use bivariate analyses, and only about one-third used multi-
variate methods (Barakat & Linney, 1992; Barakat & Linney, 1995; Brei et al.,
28 M. M. RIDOSH ET AL.

2014; Grosse et al., 2009; Kronenberger & Thompson, 1992a, 1992b; Ridosh
et al., 2016). When regression was used variance of parental depression
explained ranged from 32% and 67%. Logistic regression was used in one
study (Grosse et al., 2009) to explain relationship of variables by SB severity
(level of lesion). Another study used a generalized linear model to assess
differences between groups when both parents responded to determine the
relationship of level of lesion to depressive symptoms (Malm-Buatsi et al.,
2015). Authors of two studies tested moderation relationships. In the first
study the moderating effect of family functioning on the relation between
neuropsychological functioning and depressive symptoms was evaluated (Brei
et al., 2014). In the second group, status (with and without SB) was evaluated as a
moderator between coping and psychological adjustment (Holmbeck et al.,
1997). No moderating effects were found in these studies. Using mediation/
moderation analyses would be critical to understanding mechanisms through
which variables influence outcomes and the strength or direction of variables of
interest (Rose, Holmbeck, Coakley, & Franks, 2004) in relationships that are
more complex.
In summary, this synthesis has addressed a relatively small number of
studies conducted in families of children with SB in relation to parental
depressive symptoms. The level of evidence was mostly between level III–
VI with only one study at level I and one at III. The weaknesses of the studies
included poorly matched samples for those that had comparison groups,
relatively small convenience samples, lack of diversity in samples, almost
exclusive use of maternal caregivers as an informant, and inconsistent mea-
surement, especially in the early studies.

Meta-Analysis Study of Spina Bifida


The studies published prior to 2005 that addressed psychological distress in
parents of children with SB, had limitations acknowledged by the authors
(Vermaes et al., 2005). Synthesis of meta-findings from the earlier meta-analysis
(Vermaes et al., 2005) with study findings in the current review was not possible
due to incongruent operational definitions of variables (i.e., category of socio-
economic characteristics combined race and parent’s educational level but
excluded family income; disability parameters had large range from need for
services to severity of physical disability). Inclusion of some of the studies used
for the meta-analysis in the current review provides a means to integrate data
from these older studies with studies conducted more recently to delineate
prevalence and factors related to PDS.
The aim of the meta-analysis conducted by Vermaes et al. (2005) was to
determine if parents of children with SB had more psychological distress than
controls, if mothers and fathers differed in their levels of psychological distress,
and to delineate which factors correlated with psychological adjustment defined as
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 29

PDISS. Mothers of children with SB had more PDISS than mothers in comparison
groups, 0.73 standard deviation higher, 95% CI [.38, .97]—a medium to large
effect size (Vermaes et al., 2005). Socioeconomic variables (race, socioeconomic
status [SES], parent education level and employment) and condition severity had a
small effect on PDISS (effect size r = - 0.13). In contrast, other contextual variables
such as child behavior, emotional problems, quantity of social support, and
satisfaction with social support had moderate to large effects. Finally stress, coping,
parenting satisfaction/competence, marital adjustment, and positive family envir-
onment had moderate to large relationships with PDISS.

Comparing Early and Later Studies


There was inconsistency in the conceptual definitions of factors in the studies and
the instruments used to measure factors between early and later studies. Although
different measures were used for PDISS (in early studies) and PDS (in later
studies), the prevalence identified using the measures and the contextual and
process factors related to them were similar. For example, demographic context
factors, parent gender, and socioeconomic status, which had small relationships
with PDISS were also found to be related to PDS in studies after the Vermaes et al.
(2005) meta-analysis was conducted (Ulus et al., 2012; Valença et al., 2012).
Presence of SB, operationalized as severity in more recent literature, were related
to both PDISS and PDS. Process factors (i.e., family and parent factors) were
similar before and after the Vermaes et al. (2005) meta-analysis. A few new parent
factors were examined in recent studies, such as those that focus on leisure time
and travel/socialization (Grosse et al., 2009; Ok & Kurzrock, 2011). Restricted
leisure (one or no leisure days per month) experienced by families with children
with SB (27%) versus a comparison (4%) group related to PDS (Grosse et al. 2009),
while surgical intervention for bowel management affected travel/socialization.
PDS was significantly improved post-surgery as parents were less often prevented
from leaving the home (Ok & Kurzrock, 2011). A more expanded conceptualiza-
tion of parent leisure and socialization are needed to better understand the
protective influence of leisure activities.

Concepts and Instruments


Variability in measures of PDS was evident across studies. The early studies
(before 2005) addressed the broad and complex PDISS construct (n = 9),
whereas later studies more specifically addressed PDS (n = 8). The most
common instruments used to measure PDISS were the Symptom Checklist-
90-revised (SCL-90-R) (7) and the Brief Symptom Inventory (BSI) (3). Two of
the early studies used the global severity index (GSI) of the BSI as a measure of
overall severity of PDISS. This approach included a broad measure of PDISS that
assessed a range of psychiatric symptoms. Further, it was not possible to
30 M. M. RIDOSH ET AL.

determine overall severity of psychological symptoms, specifically depressive


symptoms, since this was a subscale in the larger global severity index.
After 2005, studies focused specifically on PDS and most used measures that
evaluated symptoms of depression as delineated in DSM-IV. This was a positive
development, as PDS can be specifically measured as a clinically relevant
indicator of mental health, thus facilitating evaluation and further diagnosis
and treatment. Only one recent study used the Symptom Checklist-90-revised
and the global severity index (Devine et al., 2012). Five instruments, Beck
Depression Inventory (BDI), Generalized Contentment Scale (GCS), Center
for Epidemiologic Studies Depression Scale (CES-D), Fecal Incontinence and
Constipation Quality of Life (FICQOL), and the Medical Outcome Study Short
Form Health Survey (SF-36), measured depressive symptoms. The first three
scales have published reliability and validity data that support their specific
measure of PDS. The FICQOL and Medical Outcome Study Short Form
Health Survey (SF-36) have scale and specific items that address PDS, although
their reliability and validity have not been established.

Prevalence of Depressive Symptoms


In each of the studies reviewed depressive symptoms were measured by self-report
and no clinical evaluation or confirmation of a depression diagnosis was reported.
Criterion for depressive symptoms was only reported in four studies using T-score
greater than 63 on Global Severity Index of the SCL-90-R tool (Friedman et al.,
2004; Holmbeck et al., 1997; Kronenberger & Thompson, 1992a, 1992b). Only two
other studies reported criteria for clinically relevant depressive symptoms, namely,
BDI greater than 10 (Valença et al., 2012) and GCS greater than 30 (Brei et al.,
2014). More than half of the studies found that clinical significant PDS ranged
from 14–48 % (see Table 1). The early studies measuring PDISS and the later
studies measuring PDS reported similar prevalence rates of depressive symptoms
(from 19–44% and 19–48% respectively). Specifically, only one of the studies
(Hobdell, 2004) found an overall prevalence rate of distress or PDS less than
19% whereas four studies (Brei et al., 2014; Kronenberger & Thompson, 1992a,
1992b; Valença et al., 2012) cited rates of 44% or higher. Parents with adolescent/
young adults (AYA) with SB experienced the highest prevalence of PDS (i.e., 48%)
in one study (Brei et al., 2014). A pattern of lower rates of depressive symptoms
14–25% was noted in the few studies examining parents of children less than 9
years old. Most studies were limited by a wide age range (2 months–18 years) and
generally did not report the relationship of age of child to PDS, which would be
important for the design of future intervention studies.
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 31

Factors Associated with Depressive Symptoms


Contextual Factors
Contextual factors associated with depressive symptoms include demo-
graphic, condition-related, and child factors (see Figure 2).

Demographic Factors. Several studies identified a significant relationship


between gender of parent (Holmbeck et al., 1997; Ulus et al. 2012), SES, or race
and extent of depressive symptoms (Barakat & Linney, 1992; Barakat & Linney,
1995; Kronenberger & Thompson, 1992a, 1992b; Malm-Buatsi et al., 2015;
Valença et al., 2012). There were somewhat conflicting reports in the two studies
investigating gender. The first study reported fathers experienced more psycho-
logical symptoms than mothers and the symptoms were higher in fathers of a
child who had SB than in comparison fathers (25.6% vs. 16.3%) (Holmbeck et al.,
1997). Although mothers had lower scores, the difference in families with and
without SB persisted (19.2% vs. 11.1%). In contrast, in a study only of parents of
children with SB, Ulus et al. (2012) found mothers reported higher symptoms
than fathers (mean of 13.3 vs. 8.2 using the BDI). In addition, the factors related to
PDS differed with stress and coping related to PDS for fathers and family
functioning for mothers.
A few early studies that included race in a block of demographic variables
(race, child age, child gender, family SES) found mothers’ race was related to
PDISS (Kronenberger & Thompson, 1992a, 1992b). Race was the only signifi-
cant demographic variable, reported to predict 17–22% of the variance in PDISS.
One study examined group differences between Hispanic Whites and Non-
Hispanic Whites and found no significant differences in psychological symp-
toms with and without covariate of SES (Devine et al., 2012).
SES alone was rarely related to outcomes but there was some evidence that
SES in families with SB was lower than in comparison groups (Barakat & Linney,
1992; Barakat & Linney, 1995). Select early and later studies in the United States
and Brazil found indicators of SES, including the number of family members,
related to PDS (Barakat & Linney, 1995; Valença et al., 2012). In one study,
marital status was related to PDS and having the mother at home (versus at
work) was related to less PDS for fathers (Malm-Buatsi et al., 2015). Family
income was related to PDS in a study of families with AYA with and without SB
(Ridosh et al., 2016).
One study found a relationship between child age and PDS (Grosse et al., 2009)
where parents of children 0–6 years old (but not those 7–17 years of age) reported
“feeling blue more than a little of the time.” Only one study specifically focused on
AYA and this study reported the highest prevalence of PDS (Brei et al., 2014).
Older parent age was related to less PDS in one study (Malm-Buatsi et al., 2015).
32 M. M. RIDOSH ET AL.

Presence of SB. There was some support for the impact of SB on parental
outcomes in the small number of studies using SB and comparison samples.
Two found no impact (Barakat & Linney, 1995; Ridosh et al., 2016) while others
found the presence of SB related to PDISS for fathers (Friedman et al., 2004;
Holmbeck et al., 1997), and to PDS for mothers with and without children with SB
(29–32% vs 8–12%) (Civilibal et al., 2014; Grosse et al., 2009). The association
between severity of SB to PDS was found to be significant in four studies
examining the relationship (Grosse et al., 2009; Malm-Buatsi et al., 2015; Ok &
Kurzrock, 2011; Valença et al., 2012) but not in a fifth (Ulus et al., 2012). However,
condition severity was inconsistently defined across studies, which limited the
ability to clearly understand the impact of aspects of severity on depressive
symptoms. Measures of condition severity found to be related to outcome
included shunt presence, number of shunt operations, lesion level, functional
disability, mobility, bladder and bowel continence, sensation and bowel move-
ments, number of accidents, abdominal pain from constipation, and laxative use.
One study used a composite score of condition severity that included number of
shunts/revisions and bladder and bowel continence (Brei et al., 2014). Another
study employed multiple indicators of severity, including sensation and bowel
movements, number of accidents, abdominal pain from constipation, and laxative
use (Ok & Kurzrock, 2011). Development of a standardized condition severity
index may be useful for future studies.

Child Factors. Child behavior problems (BP) were related to PDISS in three
studies across a variety of age groups (Friedman et al., 2004; King et al. 1999;
Lemanek et al., 2000). Indicators of BP included Conduct Disorder,
Hyperactivity Disorder, Emotional Disorder, and Somatization (King et al.,
1999), and child internalizing and externalizing problems (Friedman et al.,
2004; Lemanek et al., 2000). King et al. (1999) found child BP were the most
significant predictor of parent depressive symptoms. Since the existing literature
was based primarily on cross-sectional data, it was difficult to evaluate whether
unidirectional or bi-directional relationships exist between child behavior pro-
blems and parent depressive symptoms. Finally, executive functioning skills
were negatively associated with PDS in AYA with SB (Brei et al., 2014).
In summary, parent gender, older parent age, SES, younger child age, and
presence and severity of SB were related to PDISS or PDS in a limited
number of studies. Child behavior problems had the largest relationship
with PDS, which may be due to same reporter bias. A specific child factor,
child executive functioning, had a moderate relationship with PDS in the
study with the highest prevalence of PDS.
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 33

Process Factors
Process factors expected to be associated with depressive symptoms included
family functioning and parent factors (see Figure 2). At least one process
factor was related to PDS in each study reviewed.

Family functioning. Family functioning is defined as family system attributes


that characterize how the family operates or behaves (McCubbin & McCubbin,
1987). When operationalized as family cohesion, social support, and support
satisfaction, family functioning was consistently found to be negatively related to
parental distress and PDS (Barakat & Linney, 1992; Brei et al., 2014; King et al.,
1999; Kronenberger & Thompson, 1992a; Ulus et al., 2012). While common
method variance, such as possible error from use of single method (self-report
measures) or collection from one informant may have introduced error, one
study which evaluated several measures of family functioning, found only family
resources was related to PDS in families of AYA with and without SB, not family
cohesion or satisfaction (Ridosh et al., 2016). Several studies found that lower
levels of satisfaction with support were related to higher PDISS (Barakat &
Linney, 1992; King et al., 1999; Kronenberger & Thompson, 1992a). Similar
findings reported in one earlier and one later (44% PDISS; 48% PDS) study
found controlling family environment, marital quality/support (Kronenberger
& Thompson, 1992a), and family protective factors (family cohesion, satisfac-
tion, mastery and esteem) (Brei et al., 2014) were predictors of depressive
symptoms. Satisfaction with support was important across all child age groups
—most notably in Barakat and Linney’s (1992) study, where social support and
support satisfaction explained 42% of the variance in the outcome. Most
recently, Ulus et al. (2012) found that the degree to which family functioning
was related to PDS differed by parent. For mothers it was the efficacy of the
family to allocate and accomplish tasks and for fathers it was problem solving
and behavior control that related to PDS.

Parent factors. Chronic sorrow, negative coping, higher stress, and lack of
parental competence were related to PDS and varied according to child age.
The only parent factor relevant in families with infants and young children was
chronic sorrow (Hobdell, 2004). Other parent factors begin to be associated with
PDS during the school age years, when managing ongoing stress places demands
on parent coping. Use of negative coping strategies was related to PDISS in
parents with school age children (Barakat & Linney, 1995). In mothers, beha-
vioral disengagement as a coping strategy and less ability to adapt to change was
related to PDISS (Holmbeck et al., 1997). Mothers’ perceptions of less compe-
tence and lower parenting satisfaction were significantly related to PDISS in two
studies (Holmbeck et al., 1997; Lemanek et al., 2000), Holmbeck et al. (1997) also
found behavioral disengagement, venting of emotions as coping strategies, and
lower parenting satisfaction were related to PDISS in fathers. Parents who
34 M. M. RIDOSH ET AL.

vented their emotions to friends were more at risk for depressive symptoms
(Holmbeck et al., 1997; Kronenberger & Thompson, 1992a).
Stress is an overall appraisal process in which perception of demands exceed
resources in the relationship between person and environment. Stress can be
acute, intermittent, or chronic and can contribute (at least in the short term) to
a state of balance yet, when prolonged, can be damaging physiologically (Lazarus
& Folkman, 1984; McEwen, 1998). Across several studies, parent stress, number of
leisure days reported, anxiety levels, and caregiver burden were indicators of stress
related to PDS (Grosse et al., 2009; Kronenberger & Thompson, 1992a; Ridosh
et al., 2016; Valença et al., 2012). Holmbeck et al. (1997) also found stress due to
role restriction and social isolation to be associated with PDS. In one intervention
study, stress was alleviated after a surgical procedure that improved bowel con-
tinence. Parents were more likely to leave their home and socialize after this
procedure, which was related to lower levels of PDS (Ok & Kurzrock, 2011). In a
Brazilian sample, depressive symptoms were related to higher anxiety and care-
giver burden (Valença et al., 2012). Generally, studies explored either family
functioning or parent factors, but not both within the same study. A notable
pattern was that either family functioning or parent factors were significant in
each study reviewed. Perhaps exploring both within the same study sample may
enhance understanding of distinct contributions to PDS.

Context and Process Factors


Multivariate analysis used in a few studies examined both contextual and
process variable contributions to outcomes (Barakat & Linney, 1995; Brei
et al., 2014; Kronenberger & Thompson, 1992a, 1992b; Ridosh et al., 2016).
The process variables generally had an either similar (Kronenberger &
Thompson, 1992a) or larger contribution to the understanding of PDISS or
PDS than did the context variables (see Figure 2; Barakat & Linney, 1995;
Brei et al., 2014). After controlling for race across samples, family functioning
variables (controlling for family environment and marital quality/support)
explained a greater amount of variance (total variance 50%) than stress (total
variance 32%) (Kronenberger & Thompson 1992a, 1992b). Barakat and
Linney (1995) found the most variance of PDISS to be explained by both
contextual and process factors (67%) when specifically evaluating negative
parent coping strategies. Although the contextual factors (SES, race, and
child factors) explained 20% of the variance in PDS, adding process variables
(i.e., problem focused, emotion-focused, and avoidant parent coping)
explained an additional 47% of the variance in the outcome (Barakat &
Linney, 1995). Finally, authors of a recent study found 57% of variance in
PDS was explained by executive functioning (a child contextual factor) and
family functioning process factors (family cohesion, satisfaction, mastery,
and esteem) (Brei et al., 2014). When multivariate analysis included con-
textual factors in the analysis, process factors accounted for more variance in
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 35

PDS/PDISS. The only study in which contextual factors contributed more


than process factors was a recent study of adolescents/young adults with and
without SB, where income (contextual factor) explained more variance (26%)
than family resources and parent stress (process factors) (12%) in PDS
(Ridosh et al., 2016), age was not significant. Yet in families with school-
aged children, parents’ negative coping strategies were related to PDS
(Barakat & Linney, 1995). There was not sufficient evidence to identify if
age of the child was a factor to consider when evaluating family functioning
and parent factors.

Summary
This body of literature provides preliminary evidence (a) for a high prevalence of
depressive symptoms in parents (up to 48%), and (b) identification of contextual
(demographic, condition, and child factors) and process (family functioning and
parent factors) factors which could potentially explain PDS. Although contex-
tual factors were important, they were not sufficient alone to explain depressive
symptoms. In the small number of studies that examined both contextual and
process factors, process factors contributed a significant additional explanation
of variance in PDS above and beyond contextual factors. Common method
variance, measurement error as a result of source or method may explain why
process variables account for more variance.
The results of this review were organized by categories to identify factors
related to depressive symptoms. An understanding of the importance of both
contextual and process factors in the study of depression outcomes was rein-
forced by the review findings. Similar findings were noted in the pre and post
2005 literatures with respect to factors associated with both PDISS and PDS. The
overall pattern of contextual and process variables related to depressive symp-
toms was consistent, whether the outcome evaluated was PDISS or PDS.
However, the later literature began to explore factors important in clinical
practice such as executive functioning (Brei et al., 2014), leisure, and socializa-
tion outside of the home (Grosse et al., 2009; Ok & Kurzrock, 2011).
One strength of this review was the exclusive focus on parent (not child)
outcomes. This allowed for review of factors related specifically to PDS and
included studies that employed reliable and valid measures of PDS. On the other
hand, the evidence presented was limited by methodological shortcomings.

Review Limitations
First, studies of adult children with SB were not included in this review and since
their parents may continue to manage their adult child’s health, exploration of
this group and factors related to PDS is needed. Second, although efforts were
made to be inclusive of terms such as psychological adjustment and psychosocial
36 M. M. RIDOSH ET AL.

distress, this review focused on PDISS and PDS and, therefore, may not be
relevant to all mental health concerns of parents of children with SB. Third,
measurement of PDS tended to be limited to symptoms reported by parents in
the last two weeks. Also, the more specific focus on PDS in the recent literature
may not capture other symptoms such as anxiety or symptoms of substance
abuse. Alternative measures such as the PROMIS (Patient-Reported Outcomes
Measurement Information System) Mental Health Summary or Anxiety Scale
may be helpful (Hays, Bjorner, Revicki, Spritzer, & Cella, 2009). While the
purpose of this review was to synthesize the literature on depressive symptoms
in parents of children with SB, this focus limited our ability to generalize findings
to other chronic conditions.

Conclusion—gaps and implications for research and practice


While findings across early and later studies were similar, the focus on PDS as
the outcome measure permits application of these findings to clinical interven-
tions. Also, the high prevalence of PDS among families with children with SB
warrants further study. A better understanding of contextual and process factors
related to PDS (see Figure 2) is possible using multivariate analyses to determine
the contribution of factors such as condition severity, child neuropsychological
functioning, and family functioning. Further, the possible mediating and/or
moderating role of family functioning process variables for associations between
condition variables and PDS in parents of children with SB could be explored.
Although a comprehensive understanding of the factors related to PDS remains
limited, findings reported here suggest the need for parent depression screening
in families of children with SB.
There is evidence linking caregiving demands of a child with a chronic health
condition (CHC) to compromised physical and mental health of caregivers (Raina
et al., 2005). While this review specifically addressed factors related to parents’
mental health it did not evaluate other conditions or needs of parents. Given the
challenges of caring for their children, parents’ own health can become further
compromised. In a study of women experiencing depression in the context of their
own chronic condition (i.e., type 2 diabetes) “bearing multiple responsibilities for
self and others” was a major theme that negatively affected their mood (depres-
sion, anxiety, and anger) and contributed to problems with their self-management
(Penckofer, Ferrans, Velsor-Friedrich, & Savoy, 2007). Thus, additionally caring
for their child with a complex health regimen might further compromise both
child and parent health outcomes. Understanding the mental health of parents
who care for a child with a CHC while they deal with their own CHC is a major
gap to be addressed in future studies.
Further, the measurement of SB severity needs further development to tailor
the design of interventions based on condition variables. A measure of condition
severity that could be used across studies would be beneficial to include. One
COMPREHENSIVE CHILD AND ADOLESCENT NURSING 37

such measure of condition severity can be an overall severity composite based


score in several categories: shunt status, with or without myelomeningocele,
lesion level, and ambulation status (Hommeyer, Holmbeck, Wills, & Coers,
1999). Process variables such as family functioning, parental stress, and coping
are important modifiable factors that can become integral components of inter-
vention research. The newly emerging concept of “parent leisure activities” can
be further explored to understand aspects of the activities that are useful and
protective for parents. Although predictors of PDS include demographic, con-
dition-related, neuropsychological functioning, family functioning, parent
stress, and coping factors, better understanding of their mediating and moder-
ating relationships can support the development of intervention programs.
Early childhood development has been understudied in this population and is
a critical period for development of child neuropsychological functioning
(Heffelfinger & Koop, 2009). Stress caused by early childhood adversity and
exposure to PDS, can have long-term implications for neuropsychological
development and the adaptational trajectory of chronic health conditions
(Shonkoff, Boyce, & McEwen, 2009). Although most studies included partici-
pants across a wide age range, the unique needs of parents of adolescents and
young adults with SB also are understudied. Combining across all ages may
overlook the unique challenges of each age group and the trajectory of parent
depression across the child’s developmental stages. Longitudinal research is
critical to understanding factors pertinent to parents of children in specific age
groups. Sample sizes of studies need to be increased through multi-site and
interdisciplinary partnerships to make it possible to use advanced statistical
methods. Better understanding of risk and protective factors across the life
span will guide researchers and clinicians to improve outcomes for parents
affected by having a child with a chronic health condition.
This review adds a theoretically based synthesis of findings related to PDS in
families of children with SB. Factors related to PDS were identified and gaps
were highlighted to guide future research involving families of children with
SB and potentially other CHCs. While research indicates that a significant
portion of the variance (32–67%) in PDS can be explained by contextual and
process factors, there is much further study needed to account for the inter-
action of these factors or mediators explaining PDS. These findings do suggest
that parents may benefit from screening for depressive symptoms and referrals
when clinically indicated.

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