Caregiver Demand and Parent Distress in Juvenile Rheumatic Disease: The Mediating Effect of Parent Attitude Toward Illness

Abstract

Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7-18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.

Full text

Caregiver Demand and Parent Distress in Juvenile Rheumatic
Disease: The Mediating Effect of Parent Attitude Toward Illness
Jamie L. Ryan •Larry L. Mullins •Rachelle R. Ramsey •
Margaret S. Bonner •James N. Jarvis •
Stephen R. Gillaspy •John M. Chaney
ÓSpringer Science+Business Media New York 2013
Abstract Parents of youth with juvenile rheumatic dis-
eases (JRD) often take on illness management responsibili-
ties that can become burdensome, potentially resulting in
poor parent adjustment outcomes. However, not all care-
givers will experience increased distress as a result of vari-
ability in stress appraisals. The current study examined the
role of parent illness attitudes in the relation between per-
ceived caregiver demand and parental distress. Youth
(N=70) ages 7–18 years diagnosed with a JRD and their
parents were recruited from a pediatric rheumatology clinic.
Parents completed measures of caregiver demand, parental
distress, and illness attitudes. Hierarchical regression
revealed a relationship between caregiver demand and
parental distress. A significant relationship was also found
between caregiver demand and parent illness attitudes, as
well as parent illness attitudes and parental distress. Thus,
parent illness attitudes mediated the relationship between
caregiver demand and parental distress. Techniques aimed at
altering negative illness attitudes may help parents cope with
their caregiving responsibilities.
Keywords Attitude toward illness Caregiver demand 
Parent distress Juvenile rheumatic disease
Introduction
Juvenile rheumatic diseases (JRDs) are a common yet
understudied group of pediatric autoimmune disorders.
JRDs affect an estimated 294,000 children and adolescents
(1 in 250 youth) under the age of 18 in the United States
(Sacks, Helmick, Luo, Ilowite, & Bowyer, 2007). Char-
acterized by joint pain and swelling, connective tissue
inflammation, and chronic joint pain (Cassidy, Petty,
Laxer, & Lindsley, 2010), JRDs can result in limited
mobility, chronic fatigue, and in some cases, growth
retardation and impaired vision (Grassi, Corona, Casellato,
Carnelli, & Bardare, 2008; Hewlett et al., 2005; Plasqui,
2008). Given the recurrent and unpredictable course in
JRDs, families of these children are presented with a host
of treatment demands and stressors (Iobst, Nabors, Brun-
ner, & Precht, 2007).
From a family systems perspective, a stressor such as a
chronic illness in any member of the family has the
potential to affect all other members (Kazak, Rourke, &
Crump, 2003). In general, how parents perceive their
experience in dealing with a child’s illness (e.g., illness
J. L. Ryan (&)L. L. Mullins R. R. Ramsey 
M. S. Bonner J. M. Chaney
Department of Psychology, Oklahoma State University,
116 North Murray Hall, Stillwater, OK 74078, USA
e-mail: jamie.ryan@okstate.edu
L. L. Mullins
e-mail: larry.mullins@okstate.edu
R. R. Ramsey
e-mail: rachelle.r.ramsey@okstate.edu
M. S. Bonner
e-mail: Margaret.bonner@okstate.edu
J. M. Chaney
e-mail: john.chaney@okstate.edu
J. N. Jarvis
Department of Pediatrics, Columbia University Medical Center,
630 W. 168th St., New York, NY 10032, USA
e-mail: jj2583@columbia.edu
S. R. Gillaspy
Department of General Pediatrics, University of Oklahoma
Health Sciences Center, 1100 N. Lindsey Ave., Oklahoma City,
OK 73104, USA
e-mail: Stephen-gillaspy@ouhsc.edu
123
J Clin Psychol Med Settings
DOI 10.1007/s10880-013-9365-0

intrusiveness, perceived vulnerability, parental overpro-
tection) is a strong predictor of adjustment and coping for
both the child and parents (e.g., Andrews et al., 2009;
Colletti et al., 2008). Notably, for parents of children with a
chronic illness, perceptions of the demand or time required
to care for an ill child is associated with parent adjustment
outcomes. Providing high levels of care and illness man-
agement can become quite burdensome and may impact
both the physical and psychological health of a caregiver
(Bonner, Hardy, Willard, & Hutchinson, 2007; Wolfe-
Christensen et al., 2010). Following the diagnosis of a JRD,
parents often serve as primary medical caregivers, a role
accompanied by new, complex responsibilities and stress-
ors. Depending on the age and functional ability of a child
with a JRD, caregivers are responsible for various aspects
of illness management, including administration of medi-
cation and injections, refilling prescriptions, taking the
child to doctor appointments, encouraging behaviors that
help prevent flare-ups (e.g., exercise, use of splints, mas-
sage), managing chronic pain (e.g., comfort, analgesics),
and helping the child cope with their illness (Cassidy et al.,
2010). For parents of youth with a JRD, the role of care-
giver is a long-term endeavor, especially as the risk for
functional limitations increases with disease severity and
activity (Minden et al., 2002; Packham & Hall, 2002).
In general, distress among parents caring for children with
chronic conditions is considerably higher in comparison to
healthy community samples (see Barlow & Ellard, 2006 for a
review). However, results have been mixed for caregivers of
youth with a JRD, with some studies finding that caregivers
demonstrate adaptive skills and levels of anxiety and social
support similar to parents of healthy children (Bruns , Hilario,
Jennings, Silva, & Natour, 2008; Gerhardt et al., 2003;
Hagglund, Vieth, Sadler, Johnson, & Hewett, 2000). Nota-
bly, Bruns et al. (2008) found that perceived caregiver bur-
den was associated with parental emotional functioning
rather than the child’s illness factors (e.g., severity or func-
tional status). In other words, type or degree of physical
limitation was not related to caregiver quality of life, sug-
gesting that the emotional aspects or cognitive appraisals of
JRDs have a stronger impact on caregiver distress. As such,
not all caregivers will experience distress, in part because of
variability in stress appraisals (e.g., perceived support or
parenting stress), which can either function to protect or
exacerbate the likelihood of adjustment difficulties (e.g.,
Anthony, Bromberg, Gil, & Schanberg, 2011; Bruns et al.,
2008).
One stress-processing factor that has been shown to be
associated with adjustment outcomes is attitude toward ill-
ness, defined as an individual’s evaluation of the medical
condition, either favorable or unfavorable (e.g., Austin &
Huberty, 1993; Olson et al., 2007). Children’s attitudes
toward their rheumatic disease have been found to predict
adjustment-related outcomes, including depression and
anxiety, self-esteem, behavioral problems, and functional
abilities (e.g., Iobst et al., 2007; LeBovidge, Lavigne, &
Miller, 2005; Ramsey, Bonner, Ryan, Mullins, & Chaney,
2013a; Wagner, Smith, Ferguson, Horton, & Wilson, 2009).
Interestingly, research on caregivers’ stress appraisals,
including attitudes, of their child’s JRD is relatively scarce.
Based on findings that child illness attitudes influence
their adjustment outcomes, it stands to reason that care-
giver perceptions regarding their child’s illness may
influence parental distress, and ultimately child adjustment
outcomes (Ramsey et al., 2013b; Ryan et al., 2010).
Indeed, parental adjustment to the child’s JRD has dem-
onstrated temporal precedence and a downstream effect on
child depressive symptoms over time (Ryan et al., 2010),
providing additional support for the need to examine the
relation between parental attitudes and distress. Further
examination may help identify stress appraisal mechanisms
and specific illness attitudes to target through psychologi-
cal interventions with parents of youth with JRDs. Thus,
the purpose of the current study was to examine the
potential mediating role of parent illness attitudes in the
perceived caregiver demand–distress relationship in a
sample of caregivers of youth with JRDs. It was hypothe-
sized that caregivers who reported higher levels of per-
ceived demand in managing their child’s rheumatic disease
would perceive their child’s illness to be more negative,
and as a result, experience increased parental distress.
Methods
Participants and Procedure
Participants included 70 parents (87 % mothers, 13 %
fathers) of children and adolescents (49 female) ages 7 to
18 years (M=13.20, SD =2.88) with a JRD (67.2 %
juvenile idiopathic arthritis, 10.9 % juvenile dermatomy-
ositis, 6.2 % lupus, 4.7 % spondylarthropathy, 10.9 %
other rheumatic disease) from a pediatric rheumatology
clinic at a large children’s hospital in the Midwestern
United States. The majority of caregivers were married
(50.7 %), and the sample was primarily Caucasian
(67.2 %), followed by Native American (16.4 %), African
American (4.5 %), Hispanic (4.5 %), Asian (3.0 %), and
other ethnic groups (4.5 %).
As part of a larger study examining child and parent
adjustment outcomes in JRDs, inclusion criteria were a
diagnosis of a JRD and patient age of 7–18 years, and
exclusion criteria included parent or youth demonstration
of a significant cognitive deficit (e.g., mental retardation),
youth diagnosed with a comorbid chronic illness, and
parent or youth who was not fluent in English. Of the 119
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123

parents of youth with a rheumatic disease who were able to
be contacted for recruitment, only one declined participa-
tion due to lack of interest (99.16 % consent rate). Seventy-
nine consented participants completed the study (66.95 %
completion rate), although nine did not provide complete
data. The remaining 40 consented participants either did
not return questionnaires despite in-clinic reminders and/or
phone calls (n=38), or stated that they did not have the
time (n=1) or were no longer interested in participating
in research (n=1).
Patients meeting eligibility criteria were identified by
the pediatric rheumatologist during a regularly scheduled
clinic visit. Eligible parents and youth were approached by
research assistants and given a detailed description of the
study, and written consent/assent was obtained. The care-
giver who attended the clinic visit was asked to complete
the study packet, and if multiple caregivers were present
they were asked to choose one primary caregiver to com-
plete all of the measures. The current study was approved
by the hospital’s institutional review board, and all aspects
of the project were conducted in compliance with the
American Psychological Associations ethical guidelines for
research. Participants completed packets in the clinic or at
home and then returned them via postage-paid mail. The
total time commitment for each family to complete the
questionnaires was approximately 60 min, and participants
were compensated $20 upon completion.
Measures
Background Information Questionnaire. A background
questionnaire ascertained demographic information, such
as the child’s age and grade, parent’s age, child and par-
ent’s ethnicity, child’s living arrangement, parent marital
status, and annual household income.
Caring for My Child with a Rheumatic Disease Scale
(adapted from the Caring for My Child with Cancer Scale;
CMCCS, Wells et al., 2002). The original CMCCS is a
28-item caregiver-report measure designed to assess per-
ceived caregiver demand. Parents rated the degree of diffi-
culty/effort and the amount of time it takes to complete given
tasks across five dimensions of caregiving: physical care of
the child, emotional care of all family members, financial
management, maintenance of family roles and functions, and
communication with healthcare professionals and other
related agencies. For purposes of the current study, the ori-
ginal CMCCS was adapted to be specific to JRDs, such that
‘cancer’ was replaced by ‘JRD’ for all items. No other sub-
stantive changes were made. Similar to the original CMCCS,
the adapted measure was scored by multiplying the ‘‘diffi-
culty/effort’’ and ‘‘time’’ scores for each item and then taking
the square root of the product, resulting in a ‘‘demand’’ score
ranging from 1 to 5. These scores were then summed to create
a total score (possible range: 24–120), with higher scores
indicative of greater demand. In its use with pediatric cancer
populations, the CMCCS has demonstrated high internal
consistency (Cronbach’s a=.93) and high test–retest reli-
ability (r=.90 over a 3- to 7-day period; Wells et al., 2002).
Cronbach’s afor the current sample was .94.
Parent Attitude Toward Child’s Illness Scale (adapted
from the Child Attitude Toward Illness Scale; CATIS,
Austin & Huberty, 1993). The Parent Attitude Toward
Child’s Illness Scale is a 13-item self-report measure that
assesses how positively or negatively parents of children
diagnosed with a chronic illness feel about their child’s
chronic condition. Following the guidelines of the original
authors of the CATIS, the measure was adapted to assess
parental attitudes toward their child’s JRD for the present
study. The content of the items on the parent version were
based on the original child version but contained modified
wording directed towards parent attitudes (e.g., ‘‘How good
or bad do you feel it is that your child has a rheumatic
illness?’’). Similar to the child version, items on the parent-
report measure were summed and then divided by 13
(possible range: 1–5) to calculate a composite score.
Higher scores indicate more favorable attitudes toward the
child’s rheumatic disease. Because this measure was
adapted with this study in mind, no reliability or validity
data are available. In the current sample, the parent-version
of the CATIS had good internal reliability (a=.84).
Brief Symptom Inventory (BSI). The BSI (Derogatis,
1993) is a 53-item self-report measure that assesses adult
global psychological adjustment. Parents rated the degree
to which psychological symptoms (e.g., poor appetite,
difficulty making decisions, feelings of guilt) caused dis-
tress during the past seven days. Items were rated from 1
(not at all)to4(extremely), and then scores were summed
and divided by the total number of items to obtain a Global
Severity Index (GSI) which was used as the measure of
parental distress (possible range: 0–4). The BSI has been
found to have satisfactory internal consistency, ranging
from .71 to .85 (Derogatis, 1993). Additionally, the BSI has
been used extensively as a measure of parental distress in
studies examining parent contributions to child and parent
adaptation and outcome to chronic illness (e.g., Bonner
et al., 2007; Fredericks et al., 2007; Gavin & Wysocki,
2006). Cronbach’s afor the current sample was .97.
Children’s Depression Inventory (CDI). Given the large
amount of evidence demonstrating a significant relation-
ship between child and parent distress in pediatric chronic
illness including JRDs (e.g., Lopez, Mullins, Wolfe-
Christensen, & Bourdeau, 2008; Ramsey et al., 2013b;
Ryan et al., 2010), youth in the present study completed the
CDI as a measure of child distress. The CDI (Kovacs,
2003) is a 27-item self-report measure for youth ages
7–17 years of depressive symptoms during the previous
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123

2 weeks. A total score was calculated by summing items,
with high scores indicating greater depressive symptoms.
Utilizing youth CDI scores as a covariate allowed us to
control for child depressive symptoms in subsequent
analyses with parental distress as an outcome variable. The
CDI has demonstrated good internal reliability in samples
of youth with JRDs (Ryan et al., 2010; Wagner, Chaney,
Hommel, Andrews, & Jarvis, 2007), and Cronbach’s afor
the current sample was .96.
Physician-Rated Functional Disability (PRFD). PRFD
(Hochberg et al., 1992) was determined by rheumatologist
classification of youth into one of four functional classes
ranging from class I (limited or no disability in vocational
and self-care activities) to class IV (severe disability). This
classification system has been shown to be a valid index of
functional disability in children with a JRD (Hagglund
et al., 2000). The rheumatologist provided disability clas-
sifications following a routine physical examination.
Overview of Analyses
First, the data set was examined for missing values, and if
5 % or less of items were missing from any single measure,
participant-specific mean values were imputed (Saunders
et al., 2006); however, if more than 5 % of items were
missing from any single measure, pairwise deletion was
applied. There was minimal missing data (\2 %). In
addition, the sample was examined for outliers (i.e., C3SDs
from the mean; Cousineau & Chartier, 2010). GSI (i.e.,
parental distress) scores more than 3SDs from the mean
were examined for data entry errors, intentional misrep-
orting, and legitimate outliers that were sampled from the
correct population. Legitimate outliers (n=2, \1 %) who
represent the sample of the population at risk for increased
adjustment difficulties were truncated to within 3SDs of the
mean. Through truncation, the relative ordering of the data
was maintained, and the parents with greater distress had
the highest GSI scores, yet the distributional problems were
reduced (Cousineau & Chartier, 2010).
To allow for a more conservative test of the hypothe-
sized pathway, theoretically-driven covariates were entered
in all subsequent analyses. As such, PRFD, household
annual income, child-reported distress (CDI total scores),
and child age were selected based on their association with
parental distress across pediatric chronic illness popula-
tions (e.g., Fedele et al., 2011; Lustig, Ireys, Sills, &
Walsh, 1996; Raina et al., 2005; Ryan et al., 2010). Fol-
lowing the guidelines of Baron and Kenny (1986) and
Holmbeck (1997), the conditions of mediation were tested
using a series of hierarchical multiple regression analyses.
First, the direct relation between caregiver demand and
parental distress was examined. Then, the relation between
caregiver demand and parent attitudes toward their child’s
illness was analyzed. Following this, the association
between parent illness attitudes and parental distress was
examined. Lastly, the relation between caregiver demand
and parental distress was investigated while controlling for
parent attitudes toward their child’s illness. In accordance
with the guidelines for testing mediation models (Preacher
& Hayes, 2004,2008), post hoc probing (i.e., bootstrapping
approach) was used to test the significance of the indirect
effect of parent illness attitudes on the caregiver demand to
parental distress association.
An additional assumption of mediation is that no pre-
dictor x mediator interaction exists (MacKinnon, Fairchild,
& Fritz, 2007), such that parent illness attitudes moderates
the relation between caregiver demand and parental dis-
tress. To test for a predictor x mediator interaction, care-
giver demand and parent illness attitude scores were
centered by subtracting the sample mean from each score
(Aguinis, 2004). Next, the same four covariates were
entered on the first step of the regression equation. Cen-
tered caregiver demand and parent illness attitude scores
were entered on the second step, and the caregiver demand
x parent illness attitudes score was entered on the third step
of the equation.
Exploratory Analyses
Recent research has suggested that global or multidimen-
sional measures of parental distress, such as the BSI
(Derogatis, 1993), may be problematic as a result of
inconsistent factor structures (Greenblatt & Landsberger,
2002) and the notion that high scores on general measures
may be a result of other stressors related to caring for a
child with a chronic illness rather than depression per se
(Fisher et al., 2007). Although the BSI may capture the
distinct aspects of symptomatology in caregivers of chil-
dren with a chronic illness, it may not adequately or solely
measure general distress. Therefore, domain-specific indi-
ces of parental adjustment (i.e., depression) are helpful in
delineating specific features of parent adjustment that are
most influential in determining child adjustment outcomes.
As such, exploratory analyses included only the items from
the BSI that directly match specific DSM-IV criteria for
Major Depressive Disorder. The 13-item revised Depres-
sion scale was constructed by a licensed psychologist and
four doctoral level clinical psychology graduate students,
who reviewed all BSI items and selected those that mapped
onto DSM-IV criteria (Table 1). The purpose of the revised
scale was to more closely examine the relation between
caregiver demand and domain-specific distress versus
general parental distress. The internal consistency for the
revised Depression scale in the current sample was .93.
In addition, specific items of the Parent Attitude Toward
Child Illness Scale were selected to better understand
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123

which component of parent illness attitudes could be
directly related to increased parental distress. Based on
previous research indicating that parents of children with a
chronic medical condition are often responsible for pro-
viding illness-related physical and emotional care (Bonner
et al., 2007; Wolfe-Christensen et al., 2010) and are
therefore less likely to participate in positive and person-
ally rewarding experiences (i.e., illness intrusiveness;
Devins, Seland, Klein, Edworthy, & Saary, 1993), it stands
to reason that items specific to feeling different from par-
ents of healthy children might help explain general distress.
As such, item 8 (‘‘How often do you feel that your child’s
rheumatic illness keeps you from starting new things?’’),
item 9 (‘‘How often do you feel different from others
because of your child’s rheumatic illness?’’), and item 13
(‘‘How often do you feel just as good as other parents even
though your child has a rheumatic illness?’’) were selected
to examine the potential mediating effect of the caregiver
demand–parent distress relation.
Results
Descriptive and Preliminary Analyses
On average, parents in the current sample reported low to
moderate caregiver demand (M=48.08, SD =13.27,
observed range: 25–90), somewhat negative attitudes
toward their child’s illness (M=2.88, SD =.57, observed
range: 1–4), and limited parent distress (M=.40, SD =.42,
observed range: 0–1.8). Youth with JRDs reported depres-
sive symptoms in the ‘‘mild’’ range (M=7.30, SD =6.66,
observed range: 0–28), on average, and had limited or no
disability in vocational and self-care activities (M=1.33,
SD =.63, observed range: 1–4) on the physician-rated
functional disability scale.
In addition, mothers of youth with a JRD, on average,
reported higher caregiver demand (M=48.89 and 44.04,
SD =13.51 and 15.84), more negative illness attitudes
(M=2.83 and 3.16, SD =.56 and .46), and increased
levels of parental distress (M=.40 and .31, SD =.43 and
.31) compared to fathers. However, independent samples
t-tests indicated that mean differences were not statistically
significant for any of the key variables (p[.05).
Primary Analyses
Regression analyses revealed a significant direct relation
between caregiver demand and parental distress, after
controlling for covariates, such that higher levels of care-
giver demand were related to higher levels of parental
distress. Next, a significant relation between caregiver
demand and parent illness attitudes was found, such that
higher levels of caregiver demand were related to more
negative parent attitudes toward their child’s rheumatic
disease (i.e., lower illness attitude scores). Additionally,
regression analyses revealed a significant relation between
parent attitudes toward their child’s rheumatic disease and
their levels of distress, such that parents who reported more
negative attitudes toward their child’s illness endorsed
higher levels of distress. Finally, after controlling for par-
ent illness attitudes, caregiver demand was no longer a
significant predictor of parental distress (Table 2). Thus,
parent attitudes toward their child’s rheumatic disease
mediated the relation between caregiver demand and
parental distress. Post-hoc bootstrapping analyses revealed
a significant indirect effect indicating that parent illness
attitudes did, indeed, mediate the relation of caregiver
demand and parental distress (95 % CI =.003 to .014; see
Fig. 1).
Results of the hierarchical regression analyses revealed
that the interaction of caregiver demand 9parent illness
attitudes did not contribute significant variance to the
prediction of parental distress (p[.05). Parent attitudes
toward their child’s rheumatic disease did not moderate the
relation between caregiver demand and parental distress.
Exploratory Analyses
Utilizing only items from the BSI that map onto specific
DSM-IV depression symptoms, regression analyses revealed
a significant relation between caregiver demand and
depression-specific parental distress (b=.34, t(68) =2.72,
p=.01). Furthermore, there was a significant relation
between parent illness attitudes and depression-specific
distress (b=-.45, t(68) =-3.91, p\.001), such that
more negative attitudes were associated with higher levels of
depressive symptoms among parents. Lastly, after control-
ling for parent illness attitudes, caregiver demand was no
Table 1 Revised DSM-IV specific depressive symptoms scale
9. Thoughts of ending your life
11. Poor appetite
16. Feeling lonely
17. Feeling blue
18. Feeling no interest in things
25. Trouble falling asleep
27. Difficult making decisions
35. Feeling hopeless about the future
36. Trouble concentrating
39. Thoughts of death or dying
49. Feeling so restless you couldn’t sit still
50. Feelings of worthlessness
51. Feelings of guilt
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longer significantly related to depression-specific parental
distress (b=.10, t(68) =.73, p=.47), indicating that
parent attitudes toward their child’s illness mediated the
relation of caregiver demand to depression-specific distress.
Controlling for the same four covariates, analyses
revealed that item 8 (b=.19, t(68) =1.56, p=.12), item
9(b=.20, t(68) =1.63, p=.11), and item 13 (b=.21,
t(68) =1.72, p=.09) individually mediated the relation
between caregiver demand and parental distress in parents
of youth with rheumatic disease. Together, these results
indicate that parents who feel different from other parents
or held back by their child’s rheumatic disease are at
increased risk for experiencing parental distress.
Discussion
The present study examined the mediating effect of parent
attitudes toward their child’s JRD on the relationship
between perceived caregiver demand and parental distress.
Consistent with hypotheses and the existing literature (e.g.,
Barlow & Ellard, 2006; Bonner et al., 2007), regression
analyses revealed a significant direct effect of caregiver
demand on parental distress, such that higher levels of
demand were associated with increased distress. Results
also revealed that parent attitudes toward their child’s
rheumatic disease were negatively associated with parental
distress, such that more negative evaluations of the illness
were related to higher levels of distress. This result is
consistent with the pediatric literature that has demon-
strated the relationship between negative illness attitudes
and child adjustment difficulties, such as increased
depression and anxiety, decreased self-esteem, and aca-
demic problems (e.g., Iobst et al., 2007; LeBovidge et al.,
2005; Wagner et al., 2009). Importantly, parent illness
attitudes mediated the perceived caregiver demand–distress
relation after controlling for theoretically-driven demo-
graphic and disease variables. Thus, parents with negative
attitudes toward their child’s rheumatic disease were at
increased risk for experiencing general distress. This was
further supported by the examination of depression-specific
distress, demonstrating that parent illness attitudes also
mediated the relationship between caregiver demand and
depressive symptoms. Specific to parent illness attitudes
and potential clinical implications, exploratory analyses
also revealed that caregivers who feel different than other
parents or limited by their child’s rheumatic disease were
more likely to experience increased parental distress.
The caregiver demand–parent cognitive appraisal (i.e.,
illness attitudes) relation demonstrated in the present study
is well documented in children with a chronic medical
condition (e.g., Bonner et al., 2007; Wolfe-Christensen
et al., 2010). Parents of children with JRDs often serve as
primary caregivers and must quickly learn how to manage
their child’s illness following the diagnosis. Although
many parents may develop a routine and adapt to the new
demands of managing their child’s illness, there is reason
to suspect that the observed caregiver demand–illness
attitude association is more likely to occur in parents of
youth with JRDs, due in part to the chronic and
Table 2 Hierarchical multiple regression analysis of parent illness attitudes mediating caregiver demand–parental distress relationship
Model Predictors b t F Total R
2
1 PRFD .27* 2.22
Income -.21 -1.92
CDI total score .24* 1.98
Child age -.06 -.58 4.79 .18
2 Caregiver demand .32*** 2.69
Illness attitudes -.41*** -3.67
Caregiver demand and illness attitudes .11 .81 6.65 .33
Step 1 was the same in all regression equations
PRFD physician-rated functional disability, CDI Children’s Depression Inventory
*p\.05, ** p\.01, *** p\.001
Parent
Illness Attitudes
Caregiver
Demand
Parental
Distress
-.41***
-.55***
.32** (.11ns)
Fig. 1 Parent attitude toward their child’s rheumatic disease as a
mediator between caregiver demand and parental distress. Values on
paths are path coefficients (standardized betas). The path coefficient
in parentheses is standardized partial regression coefficient control-
ling for parent illness attitudes. **p\.01, ***p\.001
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123

unpredictable nature of the disease course (Cassidy et al.,
2010). For parents of youth with a JRD, even strict
adherence to prescribed medical regimens may not protect
the child from experiencing symptom flare-ups and disease
exacerbations (Hommel et al., 2006). Although specula-
tive, these findings suggest that persistent behavior-out-
come noncontingencies may lead caregivers to feel a loss
of control about their ability to help their child cope with
their rheumatic disease, and develop more negative atti-
tudes toward their child’s illness, ultimately increasing
parental distress. Additional research with other disease
populations is of course necessary to determine if this is
indeed the case for JRDs.
The current results help to explain the role of parent
cognitive appraisals in the caregiver demand–distress rela-
tion in parents of youth with JRDs and the mixed results in
the current literature. Although several studies have sup-
ported the notion that caring for a child with a chronic
medical condition and being responsible for managing their
illness on a daily basis puts parents at increased risk for both
physical and psychosocial adjustment difficulties (e.g.,
Brouwer et al., 2004; Bonner et al., 2007; Moskowitz et al.,
2007; Wolfe-Christensen et al., 2010), others have found
caregivers of children with a JRD to be quite resilient
(Bruns et al., 2008; Gerhardt et al., 2003). Results of the
current study suggest that although parents perceive rela-
tively low demands in managing their child’s illness, it may
be how favorably or unfavorably a parent views their child’s
rheumatic disease that is most strongly related to levels of
distress and thus helps to explain why a subsample of
caregivers are at risk for adjustment difficulties.
The findings in the present study must be qualified by
several limitations. First, generalization of these results are
somewhat limited by a relatively homogenous sample of
participants from similar demographic and socioeconomic
backgrounds (e.g., majority were mothers, reported middle-
upper annual income level, and were married). However,
this concern was attenuated somewhat by the inclusion of a
relatively culturally heterogeneous sample (e.g., 16.4 %
Native American, 4.5 % African American, 4.5 % His-
panic, and 3.0 % Asian), in which potential group differ-
ences in belief systems and/or parenting behaviors may
impact perceived demand and illness attitudes. Neverthe-
less, caution should be exercised in generalizing the find-
ings to other pediatric illness groups and more diverse
groups of caregivers of children with JRDs. Another lim-
itation involves the use of self-report inventories that may
have resulted in spurious correlations due to shared method
variance rather than actual associations between the target
variables (e.g., Braddick et al., 2010). However, it is likely
that if the same source of variance was responsible for the
observed relation between all three variables, regression
results would have most likely shown that both perceived
caregiver demand and parent illness attitudes exert signif-
icant influence on parent distress. Because parent attitudes
toward their child’s rheumatic disease made a unique
contribution to parent distress, independent of caregiver
demand, it is unlikely that the observed associations were
due to shared method variance. In addition, the adapted
measure of caregiver demand assesses perceptions of
demand, rather than actual effort and time required to
complete caregiving responsibilities; thus, it is possible that
objective versus subjective demand may impact illness
attitudes and parent distress in different ways. On the other
hand, the measure format used in the current study
accommodates variability in caregiver-report that may be
dependent on disease (e.g., child’s disease severity, func-
tional impairment) and demographic parameters (e.g.,
caregiver sex, age, knowledge/comfort with responsibili-
ties). Despite controlling for child age in regression anal-
yses, the inclusion of youth in both pre-adolescent and
adolescent phases of development should be noted as a
limitation of the current study. Given that developmental
issues, such as increasing responsibility for managing one’s
rheumatic disease with age, are fairly different for these
groups, it is possible that caregiver responsibilities, illness
attitudes, and subsequent distress may be different at var-
ious stages of child development. Lastly, 40 consented
parents did not return questionnaire packets; thus, analyses
could not be conducted to determine whether parents who
completed the study differed significantly on key variables
compared to parents who did not complete the study.
Implications and Recommendations
for Future Research
Results of the current study are consistent with the litera-
ture demonstrating the robust relationship between parent
perceptions and adjustment outcomes (e.g., Andrews et al.,
2009; Colletti et al., 2008). Our study addresses a gap in
the pediatric chronic illness literature by examining the
mediating role of parent illness attitudes on the caregiver
demand–parental distress relationship, and the findings
suggest the potential importance of parent-focused inter-
ventions aimed at altering negative perceptions held by
caregivers and providing families with problem-solving
strategies that have been shown to improve behavior and
decrease distress among parents (e.g., Askins et al., 2009;
Wade et al., 2012). For instance, teaching caregivers how
to prioritize or chunk some of their child’s illness-man-
agement responsibilities and providing them with interac-
tive exercises to practice targeted skills may increase
efficiency and reduce perceptions of caregiver demand.
Moreover, parent illness attitudes, when defined as evalu-
ative judgments and their associated feelings, are amenable
J Clin Psychol Med Settings
123

to change. While illness-related variables (e.g., pain and
fatigue) and caregiver demands may be quite difficult to
alter, the ability to target attitude change has far-reaching
implications for both the child and family. Notably, results
from exploratory analyses support the need for addressing
specific aspects of illness attitudes, particularly feelings of
isolation and detachment from other parents, in order to
help parent’s problem-solve ways they can be involved in
personally gratifying activities and simultaneously care for
their ill child (Askins et al., 2009).
Furthermore, youth with a chronic illness are typically
the primary focus of assessment and intervention. Indeed,
only a subsample of parents demonstrated elevated emo-
tional distress; however, our data indicate that even small
variations in caregiver demand can significantly influence a
parent’s attitude toward the child’s illness and their level of
distress. As such, results of the present study underscore
the importance of acknowledging and screening for parent
adjustment before these clinical indicators reach significant
levels. This can be done several ways, such having parents
complete a brief measure of psychological adjustment (e.g.,
Beck Depression Inventory or Brief Symptom Inventory)
in the waiting room when they bring their child for routine
medical appointments or encouraging physicians to check-
in with parents and ask how they are adjusting to the
diagnosis and newly acquired caretaking responsibilities.
Open lines of communication between the medical team
and family and validation of the stress that accompanies
caring for a child with a chronic medical condition may
help foster a supportive relationship and result in positive
adjustment outcomes (e.g., increased adherence, less
parental distress, and decreased parent–child conflict) for
both the child and parent.
Future research should examine the role of parent illness
attitudes in the caregiver demand–distress association over
time in order to investigate the temporal precedence of
negative illness attitudes relative to parental distress and
other adjustment difficulties (e.g., marital conflict, isola-
tion, parent–child conflict). This would also allow exami-
nation of the association between caregiver demands and
distress over the course of an unpredictable illness. More-
over, future studies need to continue examining the relation
between parent and child illness attitudes, including age,
race, and sex differences, to better elucidate the cognitive
appraisal mechanisms underlying the transactional parent–
child distress association in this population.
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