Parenting Stress Among Caregivers of Children With Chronic Illness - A Systematic Review - Journal of Pediatric Psychology - Oxford Academic

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Parenting Stress Among Caregivers of Children With

Chronic Illness: A Systematic Review 
Melissa K. Cousino, MA, Rebecca A. Hazen, PhD
Journal of Pediatric Psychology, Volume 38, Issue 8, 1 September 2013, Pages 809–828,
https://doi.org/10.1093/jpepsy/jst049
Published: 10 July 2013 Article history 
Abstract
Objective To critically review, analyze, and synthesize the literature on parenting
stress among caregivers of children with asthma, cancer, cystic brosis, diabetes,
epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo,
MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched
according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96
studies was conducted. Results Caregivers of children with chronic illness reported
signi cantly greater general parenting stress than caregivers of healthy children (d =
.40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was
associated with greater parental responsibility for treatment management and was
unrelated to illness duration and severity across illness populations. Greater parenting
stress was associated with poorer psychological adjustment in caregivers and children
with chronic illness. Conclusion Parenting stress is an important target for future
intervention. General and illness-speci c measures of parenting stress should be used
in future studies.
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Keywords: chronic illness, meta-analysis, parenting stress, systematic review
https://academic.oup.com/jpepsy/article/38/8/809/919245 1/46
31/8/2018 Parenting Stress Among Caregivers of Children With Chronic Illness: A Systematic Review | Journal of Pediatric Psychology | Oxford Academic
Topic: chronic disease, parenting behavior

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Issue Section: Systematic reviews
Chronic health conditions among children are on the rise. Recent estimates approximate that
7–18% of U.S. children have a chronic health condition (National Health CareStatistics, 2006;
Perrin, Bloom, & Gortmaker, 2007; Van Cleave, Gortmaker, & Perrin, 2010). In addition to its
impact on the child, childhood chronic illness often impacts the entire family system (Kazak,
1989). Parents must face the devastating news of their child’s diagnosis, the associated
medical risks, and in some instances, their child’s potential for a shortened life expectancy.
Although some families may demonstrate resiliency in the face of such stressors, the
demanding treatment regimens and shifts in roles, responsibilities, and resources may
negatively impact family functioning.
Parenting stress, or stress directly related to the role of parent, is important to understanding
family dysfunction and psychopathology (Abidin, 1995). Parenting stress can have a variety
of e ects on parents and their children. A number of studies have documented associations
between parenting stress and adverse caregiver and child psychological sequelae. For
instance, parenting stress was shown to moderate the relationship between perceived
vulnerability and depressive symptoms in youth with diabetes (Mullins et al., 2004).
Parenting stress may also a ect child health-related outcomes as it could potentially
interfere with the management of a child’s chronic condition (Streisand, Braniecki, Tercyak,
& Kazak, 2001). For example, Barakat et al. (2007a) found that greater disease-related
parenting stress at baseline in caregivers of children with sickle cell disease was associated
with greater disease severity and more frequent health care utilization 1 year later. Given its
signi cance, a number of investigators have examined parenting stress; however, this
important literature is not well integrated. A comprehensive, cross-illness systematic review
has yet to be conducted. An analysis of this nature increases understanding of parenting
stress, highlights gaps in the literature and future directions for research, and may inform
the development of evidence-based interventions for reducing parenting stress that can be
used across pediatric chronic illness populations.
Guided in part by Lazurus and Folkman’s (1984) stress and coping model, the Transactional,
Stress and Coping Model suggests that illness parameters and parent/child adaptational
processes, such as illness-related stress appraisals and methods of coping, in uence
parent/child adjustment to chronic illness (Thompson, Gil, Burbach, Keith, & Kinney, 1993a;
Thompson, Gustafson, Hamlett, & Spock, 1992; Thompson & Gustafson, 1996). This model
has been used in previous studies of parenting stress in caregivers of children with pediatric
conditions (e.g., Colletti et al., 2008; Mullins et al., 2007; Streisand et al., 2001). The Cochrane
Collaboration (Higgins & Green, 2011) recommends that predetermined review questions
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should be developed and used when conducting a systematic review. Thus, guided in part by
this theoretical framework, a review of the literature regarding parenting stress among
caregivers of children with chronic illness was conducted. Speci cally, questions 3–6 were
guided by this theory. The review sought to answer the following questions: (i) What
measures are used to assess parenting stress in parents of children with chronic illness? (ii)
Do reports of parenting stress di er among groups of parents (e.g., parents of children with
various chronic conditions, parents of healthy children)? (iii) Do characteristics of the causal
agent (i.e., illness parameters) signi cantly contribute to parenting stress? (iv) Do parental
illness-related cognitive appraisals relate to parenting stress outcomes? (v) Do parent coping
mechanisms and resources relate to parenting stress outcomes? (vi) Does parenting stress
relate to parent and child psychological adjustment and health-related outcomes?
Methods
Search Strategy
The following databases were searched: PsychInfo, MEDLINE, and Cumulative Index to
Nursing and Allied Health Literature (excluding MEDLINE results). The search was limited to
articles published in a peer-reviewed journal from January 1980 to June 2012 to allow for the
inclusion of as many studies as possible, while also limiting the review to studies relevant to
current medical practice. Predetermined search terms were used to identify articles meeting
the inclusion criteria. The rst stem group included “parent
stress, ”“maternalstress, ”“paternalstress, ”“f amilystress, ”and “caregiv
stress.” The second stem group included “child

, ”“youth, ”“ad olescen
,” “teen$$,” “pediatric,” and “paediatric.” Terms used in the nal stem group included
“asthma,” “cancer,” “cystic brosis,” “diabetes,” “epilepsy,” “juvenile rheumatoid
arthritis,” and “sickle cell disease.” The reference sections of articles meeting inclusion
criteria were also searched.
Inclusion Criteria
Systematic Review. In accordance with recommendations provided by the Cochrane
Collaboration for conducting a systematic review, a protocol was developed and explicitly
stated objectives and inclusion criteria were de ned (Higgins & Green, 2011). Inclusion
criteria for the systematic review was as follows: (i) publication date between January 1980
and June 2012, (ii) publication in a peer-reviewed journal, (iii) written in the English
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language, (iv) study population included pediatric (0–21 years) asthma, cancer, cystic
brosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease
population, and (v) study included a quantitative measure of general and/or disease-related
parenting/caregiving stress. Measures of stress not speci c to parenting/caregiving stress
were not included. Measures of parental psychological symptoms (e.g., anxiety, depression)
were not included.
Quantitative Review (Meta-Analysis). Meta-analysis was considered for questions 2–6. It

was determined that there were a su cient number of studies comparing parenting stress for
caregivers of children with chronic illness to caregivers of healthy controls to allow for meta-
analysis for question 2. Of those meeting the general review inclusion criteria, studies that (i)
compared reports of general parenting stress between caregivers of children with chronic
illness with the reports of caregivers of healthy controls, and (ii) reported statistical
information that would allow for comparison were included in the meta-analysis for
question 2. A total of 15 studies were indenti ed. Of these, all but one used a version of the
Parenting Stress Index (PSI; Abidin, 1995) to measure general parenting stress, and therefore
was excluded. Another study was excluded due to a lack of data reported needed to calculate
an e ect size. A total of 13 studies were included in the meta-analysis. Owing to the small
number of studies examining similar constructs (e.g., adherence, depression) for questions
3–6 (i.e., less than eight studies for each construct), meta-analysis could not be used for
these questions.
Statistical Approach
Both qualitative and quantitative analyses were used to more fully draw conclusions from the
literature. For the predetermined questions that could not be answered using meta-analytic
procedures due to a small number of conceptually comparable studies (i.e., questions 3–6),
qualitative analyses were conducted using guidelines outlined by the Cochrane Collaboration
(Higgins & Green, 2011).
To determine whether or not reports of general parenting stress di er among caregivers of

children with chronic illness vs., caregivers of healthy children (i.e., controls), meta-analytic
procedures were used. A coding protocol was developed, and from the studies that compared
reports of general parenting stress between both groups of caregivers the following data were
extracted by the rst author: Chronic illness group type, sample size, age, group matching
approaches, exclusion criteria, study type, and data needed to compute e ect sizes (e.g.,
mean scores and standard deviations on parenting stress measures, F statistics). The second
author conducted a reliability check to ensure accuracy of data extracted. Attempts were
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made to contact study authors for additional data as needed.
Cohen’s d was computed for all e ect sizes (Cohen, 1988). One standardized mean di erence
e ect size was calculated from each of the remaining 13 studies according to guidelines
provided by Lipsey and Wilson (2001) for conducting group contrasts research. When more
than one measure of parenting stress was reported by a single study (e.g., mother and father
report), means were averaged. Owing to small sample sizes, e ect sizes were weighted by
study sample to reduce bias (Hedges & Olkin, 1985). Meta-analyses were performed using the
Statistical Software Package for the Social Sciences (SPSS, v. 20.0) via use of the mean e ect
size macro developed by Wilson (2006).
Cochran’s Q test was used to assess for homogeneity of e ect sizes across the studies. The
random e ects model was used as this method takes into account subject- and study-level
sampling error (Lipsey & Wilson, 2001). Cohen’s d was interpreted based on the following
recommended values: .20 = small, .50 = medium, and .80 = large (Cohen, 1988). Con dence
intervals (CIs) were used for interpretation.
Results
Study Characteristics
The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher,
Liberati, Tetzla , & Altman, 2009) guidelines were followed for the review. Search results
yielded 475 articles, excluding duplicates (n = 82). All articles were reviewed, and 96 articles
were indenti ed that met the inclusion criteria. The majority of articles excluded did not
include a measure of general and/or disease-related parenting/caregiving stress (n = 238) or
did not include a pediatric sample of children with asthma, cancer, cystic brosis, diabetes,
epilepsy, juvenile rheumatoid arthritis, or sickle cell disease (n = 141). The 96 studies meeting
inclusion criteria were reviewed, and data related to the predetermined questions were
extracted (see Table I). Of the studies included, participants from a number of countries were
represented: The United States (n = 74), Canada (n = 7), Taiwan (n = 6), the Netherlands (n =
2), Brazil (n = 1), Egypt (n = 1), England (n = 1), Iceland (n = 1), Ireland (n = 1), Germany (n =
1), Nigeria (n = 1), and Scotland (n = 1). Parenting stress was most frequently examined in
caregivers of children with diabetes (n = 31), asthma (n = 21), cancer (n = 20), and cystic
Skipbrosis
to Main(nContent
= 18). Studies assessing parenting stress in caregivers of children with epilepsy (n
= 12), sickle cell disease (n = 10), and juvenile rheumatoid arthritis (n = 3) were also identi ed.
Fifteen studies included healthy controls as a comparison group (e.g., Baroni, Anderson, &
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Mischler, 1997; Modi, 2009).
Table I.
Summary of Included Studies
a b
Study Comparison Age PS Results (E ect Size)
Group(s) (N) Measure
Arthritis
8–16 Hassles and Greater PS predicted child depressive symptoms

Anthony et (51) Upli s and pain intensity. PS was unrelated to child
al., 2011 Scale anxiety symptoms.
NR Caregiver PS was unrelated to parent education level,

Iwamoto (40) Burden duration of juvenile arthritis, and parental
et al., 2008 Scale employment. Mothers reported greater PS than
fathers.
5–16 4-item Greater disease-related PS correlated with

Manuel, (92) rating scale greater daily hassles, greater family conflict, and
2001 greater parental psychological distress. Child
illness severity and functional status were
unrelated to disease-related PS. More positive
appraisal of the child’s illness situation was
associated with decreased parental
psychological distress, even when PS was high.
Asthma
Healthy 10– PSI No di erences in PS were observed. PS was

c
Ca rey- controls 12 unrelated to peak flow variability (ES = .42).
Craig, (110)
2005
8–13 PSI PS was greater for mothers of children with

Carson & (41) asthma when compared to norms.
Schauer,
1992
8–13 PSI/SF Less PS was associated with better illness

Celano et (43) management/adherence.
al., 2011
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Article Comparison Age PS Results (E ect Size)
8–13 PSI/SF PS declined for caregivers in both the home-

Celano, (43) based family intervention group and for
Holsey, & caregivers in the enhanced treatment as usual
Kobrynski, group.
2012
6–12 PSI/SF Greater PS correlated with greater medication

DeMore et (45) adherence.
al., 2005)
4–10 PSI (5 Parents of children with asthma and sleep-

Fagnano et (194) items) disordered breathing reported greater PS than
al., 2009 parents of children with asthma only.
ADHD; DD; HIV; NR PSI Parents of children with ADHD or DD reported

c
Gupta, Healthy (146) greater total PS than parents of children with
2007 controls asthma or HIV (ES = .52).
2–18 PSI/SF Greater PS correlated with poorer mite control

Joseph et (26) adherence.
al., 2003
6–12 Care of My European American caregivers reported that

Lee et al., (37) Child with providing emotional support to child was the
2006 Asthma most time-consuming demand. African American
Scale caregivers reported that balancing demands
outside the home and managing asthma
treatments were most time-consuming.
Healthy 6–12 PSI No group di erences in PS were observed (ES =

c
Markson Controls (86) .12).
& Fiese,
2000
0–6 Care of My Providing emotional support to child was the

Svavars- (75) Child with most time-consuming caregiving task reported
dottir et Asthma by mothers and fathers. Mothers reported that
al., 2000 Scale managing own fatigue while caring for their
child, handling asthma episodes, and managing
problematic child behaviors were the most
di icult tasks. Fathers reported that handling
asthma episodes, managing problematic child
behaviors, and providing emotional support for
Skip to Main Content spouse/partner were the most di icult tasks.
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0–6 Care of My No di erences in PS were found between

Svavars- (179) Child with American and Icelandic parents. Disease-related
dottir & Asthma PS was greatest for American and Icelandic
Rayens, Scale mothers when compared to fathers. Greater
2003 disease-related PS was associated with negative
parental perceptions about child’s health.
Eczema; Healthy 7–12 PSI No group di erences in PS were observed. Child

c
Walker et Controls (232) psychosocial morbidity was unrelated to PS (ES =
al., 2007 −.30).
Cancer
2–12 PSI/SF Greater PS predicted poorer child behavioral,

Colletti et (62) emotional, and social adjustment.
al, 2008
2–10 PSI/SF Greater PS at baseline predicted at baseline more

Fedele et (22) child externalizing and internalizing problems
al., 2011 12–24 months later.
0–18 PSS Greater PS correlated with more avoidant and

Fernandes, (65) anxious adult attachment and more parental
Muller, & depressive symptoms. Attachment styles
Rodin, predicted PS.
2012
c
CP; Spina Bifida 0–18 PSI/SF Parents of children with cancer reported the
Hung, Wu (181) greatest PS.
& Yeh,
2004
NR PSI/SF Greater PS correlated with greater parental state

Kazak & (29) anxiety and greater paternal symptoms of PTSD.
Barakat,
1997
NR PSI/SF Greater PS was correlated with procedural

Kazak et (236) distress for fathers, but not for mothers.
al., 1996
3–20 CIPSQ Disease-related PS did not relate to parent

Kronen- (24) psychological distress.
Skipberger
to Mainet Content
al., 1998
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NR Caregiver PS mediated the relationship between child

Litzelman (75) Reaction cancer-related factors (e.g., activity limitations,
et al., 2011 Assessment active treatment status) and parental QOL.
NR PSI/SF Greater maternal PS correlated with poorer child

Rodden- (63) QOL and more externalizing child behavior
berry & problems, but not to child depressive or anxiety
Renk, symptoms. Greater paternal PS correlated with
2008 more externalizing child behavior problems and
child depressive symptoms.
2–16 4- item Greater PS correlated with less positive

Shapiro, (29) rating scale communication with spouse. PS was unrelated to
Perez, & the quality of the family’s relationship with the
Warden, doctor.
1998
0–21 PIP; PSI/SF Greater disease-related PS correlated with

Streisand (126) parental state anxiety and general PS.
et al., 2001
0–21 PIP Greater disease-related PS was related to poorer

Streisand (116) family functioning.
et al., 2003
c
0–18 PIP ; Mothers reported greater disease-related PS than
c
Vrijmoet- (174) PSI/SF fathers. Caregivers of young children, children on
Wiersma et treatment, and children recently diagnosed
al., 2010 reported greater disease-related PS. Disease-
related PS correlated with greater caregiver
anxiety symptoms and psychological distress.
Disease-related PS correlated with general PS.
2–12 Care of My Only general PS correlated with greater child

Wolfe- (36) Child with externalizing and internalizing symptoms and
Chris- Cancer fewer child prosocial behaviors. General PS
tensen et Scale; moderated relationship between disease-related
al., 2010 PSI/SF PS and child internalizing symptoms.
Combination of low general PS and high disease-
related PS was associated with fewer child
internalizing symptoms.
c
0–18 PSI/SF Mother and father reports of PS were similar.
SkipYeh, 2002 Content
to Main (328) Mothers and fathers of children who were o -
treatment reported the greatest PS.
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c
0–18 PSI/SF Coping style mediated the relationship between
Yeh, 2003 (441) PS and parental psychological distress (e.g.,
somatization, anxiety, depression). Greater social
support correlated with less PS.
c
0–18 PSI/SF ; S- Results supported the validation of the simplified
Yeh, Chen, (149) PSI/SF Chinese version of the PSI/SF.
Li, &
Chuang,
2001
Cystic fibrosis
Healthy 1–10 PSI No group di erences in total PS scores observed

c
Baroni et Controls (98) (ES = −.12).
al., 1997
Healthy 1–7 PSI PS was greater for caregivers of children with CF

c
Crist et Controls (44) (ES = .63).
al., 1994
0–18 PSI PS was unrelated to parent and youth report of

Czyzewski (199) quality of well-being.
et al., 1994
CHD; Healthy 0–2 PSI Greater PS experienced by fathers correlated

c
Darke & Controls (78) with less positive father–infant interactions. No
Goldberg,1 group di erences in father-reported PS. Mothers
994 of children with illness reported greater PS (ES =
.85).
3–11 PSI/SF Greater PS correlated with poorer compliance to

Eddy et al., (41) physiotherapy and dietary regimen.
1998
CHD; Healthy 4 PSI PS predicted child behavior problems

Goldberg Controls (137) (internalizing and externalizing) across all
et al., 1997 groups.
CHD; Healthy 0–1 PSI Parents of children with illness reported the
c
Goldberg Controls (71) greatest PS. Parents of children with CF reported
et al., 1990 greater stress related to child demandingness
than parents of children with CHD (ES = .68).
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NR PSI; Compared with norms, PS was greater for

Quittner, (64) Parenting parents of children with CF. Mothers reported
DiGiro- Routines greater stress related to caregiving than fathers.
lamo, Inventory –
Michel, & Stress Scale
Eigen,
1992
Healthy 2–6 FSS Mothers of children with CF reported greater PS

Quittner et Controls (66) than mothers of healthy children. Fathers of
al., 1998 children with CF reported less PS than fathers of
healthy children.
Healthy 1–2 PSI A greater percentage of parents of children with

c
Solomon Controls (49) CF endorsed PS levels above the clinical cuto .
& Breton, Parents of children with CF reported that their
1999 children were more demanding, contributing to
increased PS (ES = .61).
7–17 4-item Greater disease-related PS correlated with

Thompson (68) rating scale greater maternal psychological distress.
et al., 1992
CF carriers; <6 PSI Greater PS was associated with greater perceived

Tluczek et Congenital mos. child vulnerability.
al., 2011 Hypothyroidism (136)
Diabetes
2–8 PSI/SF PS was unrelated to diabetes knowledge,

Chisholm (65) injection frequency, injection time variability,
et al., 2007 number of blood glucose tests, and nonmilk
extrinsic sugars intake.
13– PAID-P Perceived illness-specific PS mediated the

Cunning- 18 relationship between caregiver depressive
ham, (147) symptoms and youths’ glycemic control. Partial
Vesco, mediation was found for the relationship
Dolan, & between caregiver anxiety symptoms and
Hood, youths’ glycemic control.
2011
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7–14 PIP Mothers reported greater frequency of disease-

Hansen et (125) related PS than fathers. Working mothers and
al., 2012 fathers who were more involved in their child’s
care reported greater disease-related PS. Greater
disease-related PS correlated with greater sleep
disturbances, greater symptoms of depression
and anxiety, and poorer marital satisfaction in
mothers and fathers. Greater paternal disease-
related PS correlated with younger child age and
higher A1c.
Healthy 0–11 PSI Child age, sex, and A1c were unrelated to total
c
Hauen- Controls (70) PS. No group di erences in total PS were
stein, Mar- observed between the parents of children with
vin, Sny- diabetes and parents of healthy children (ES =
der, & .51).
Clarke,
1989
10– Parental PS predicted greater caregiver depressive

Helgeson 14 Stress symptoms and poorer life satisfaction. Greater
et al., 2012 (132) Subscale PS was associated with greater child depressive
symptoms, higher A1c, and less child self-care
behaviors. Greater child self-care behaviors were
associated with declines in PS.
2–6 PIP Greater disease-related PS was associated with

Hilliard et (73) more child behavior problems.
al., 2010
1–6 PSI/SF No changes in PS levels were observed amongst

Jeha et al., (10) caregivers of young children at three time points:
2005 pre-pump therapy, 3 months of pump therapy, 6
months of pump therapy.
12– SIPA Parents of adolescents in the

Kaugars, 17 action/maintenance stage with regards to
Kichler, & (69) readiness to change the balance of treatment
Alemzadeh responsibility reported lower levels of PS.
, 2011
DSD NR PSI/SF No group di erences in PS were observed.

Kirk et al., (98)
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to Main Content
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8–19 PIP Greater disease-related PS correlated with

Lewin et (28) greater maternal state anxiety and more child
al., 2005 internalizing/externalizing behaviors.
2–6 PIP Greater disease-related paternal PS correlated

Mitchell et (43) with lower self-e icacy about diabetes
al., 2009 management, greater fear of child hypoglycemia
episodes, less hope, and greater child behavior
problems. Duration of child’s diabetes was
unrelated to disease-related paternal PS.
2–6 PIP Parents who sometimes performed nocturnal

Monaghan (71) blood glucose monitoring reported greater
et al., 2009 disease-related PS than parents who rarely/never
did this nighttime task.
2–5 PIP A telephone-based supportive intervention for

Monaghan (24) parents of young children with diabetes
et al., 2011 decreased disease-related PS.
c
4–16 PIP Parents reported a decline in disease-related PS
Muller- (117) a er transitioning to pump therapy.
Gode roy
et al., 2009
8–12 PSI/SF Greater PS correlated with greater perceived

Mullins et (43) child vulnerability and more child depressive
al., 2004 symptoms. PS was unrelated to physician rating
of disease severity, duration of diabetes, family
income, and maternal education level. Greater
perceived child vulnerability as moderated by PS
predicted child depressive symptoms.
0–5 PSI No di erences in PS were found between parents

Nabhan et (42) of children using insulin pump therapy and
al., 2009 parents of children using insulin injection
therapy.
2–7 PIP Greater PS correlated with greater parental fears

Patton et (39) of hypoglycemia and more parental depressive
al., 2011 symptoms.
Healthy 1–6 PSI Parents of children with diabetes reported

c
Skip Powers
to MainetContent
Controls (80) greater PS. Greater PS correlated with more
al., 2002 mealtime child behavior problems (ES = .60).
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0–9 PAID; ADS Greater disease-related PS was associated with

Stallwood, (73) younger child age. Parental perception of
2005 disease-related PS was associated with better
youth metabolic control.
1–17 PIP Disease-related PS was greater among younger

Streisand (102) parents, mothers, and families with lower
et al., 2008 incomes. Greater disease-related PS correlated
with more symptoms of parental depression and
anxiety. PS mediated relationship between
parental gender and anxiety and depression.
0–17 4-item Greater PS correlated with decreased parental

Streisand, (278) rating scale psychological well-being.
Mackey, &
Herge,
2010
9–17 PIP Greater disease-related PS correlated with

Streisand (134) younger child age, parent minority status, lower
et al., 2005 socioeconomic status, single-parent family
structure, insulin injection treatment, and poorer
youth metabolic control. Lower self-e icacy,
greater responsibility for treatment regimen, and
greater fears of hypoglycemia were associated
with more frequent disease-related PS. Greater
di iculty with disease-related PS was associated
with greater responsibility for treatment regimen
and greater fears of hypoglycemia. PS was
unrelated to disease duration.
12– SIPA PS did not di er amongst caregivers of teens on

Wu et al., 17 pump therapy and caregivers of teens using
2010 (62) insulin injection therapy. Greater PS was
correlated with older child age, but unrelated to
child age at diagnosis, child gender, duration of
diabetes, and family socioeconomic status.
Greater PS was related to lower child QOL and
poorer metabolic control.
2–6 PSI PS was greater for parents of children with

Wysocki et (20) diabetes when compared to norms. Greater PS
al., 1989 was correlated with more diabetes-related child
Skip to Main Content behavior problems.
Epilepsy
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2–16 PSI PS was greatest for caregivers reporting high

Camfield (97) impact of epilepsy on the child/family.
et al., 2001
7–16 PSI/SF Greater PS correlated with greater child

Cushner- (65) depressive symptoms. Parents of children with
Weinstein epilepsy and learning disabilities reported higher
et al., 2008 PS than parents of children with epilepsy only.
PS was unrelated to polytherapy, seizure
frequency, seizure type, duration of the disorder,
and age at onset.
1–19 PSI Fathers of children with epilepsy reported

Levin & (25) greater PS than normative group. No di erences
Banks, for mothers. Greater PS correlated with parental
1991 unemployment, seizure type (not well-
controlled), and greater number of child
medications. PS was unrelated to parent sex,
parent age, parent education, family income,
frequency of seizures, and child’s age at
diagnosis.
Breath Holders; 1–8 PSI Parents of children with epilepsy or severe

c
Mattie- Healthy (66) breath-holding reported greater PS than parents
Luksic, Ja- Controls of healthy children (ES = .88).
vornisky, &
DiMario,
2000
Healthy 2–12 PSI; Family No group di erences in PS were observed (ES =

c
Modi, Controls (59) Stress Scale .51).
2009 – Seizure
1–16 PSI/SF PS remain unchanged 1-year a er initiating a

Pulsifer, (65) ketogenic diet for di icult-to-control seizures.
Gordon,
Brandt,
Vining, &
Freeman,
2001
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c
4–18 PSI ; Greater PS correlated with more behavioral
Rodenburg (91) Parental problems due to child’s illness, more di icult
et al., 2007 Burden of child temperament, more symptoms of parental
Caregiving depression, less social support, lack of family
Scale cohesion, less marital satisfaction, lower levels of
parent-child relationship quality, less supportive
parenting, and lower levels of behavioral and
psychological control. The use of more emotion-
focused coping behaviors was related to greater
PS. Child illness-related behavioral problems,
child temperament, and parental depression
contributed most significantly to predicting PS.
PS mediated the relationships between familial
risk/resilience factors and parenting dimensions.
c
9–12 PSI Greater PS correlated with greater seizure
Shatla et (23) severity and more child internalizing problems.
al., 2011 Parents of children with intractable seizures
reported greater PS than parents of children with
controlled seizures.
CP 1–4 PSI/SF Greater PS correlated with maternal

Sheeran, (97) nonresolution of child’s diagnosis.
Marvin, &
Pianta,
1997b
2–18 PSI Compared to norms, PS was higher for parents of

Wirrell et (52) children with epilepsy. PS was unrelated to child
al., 2008 internalizing symptoms, child adaptive
behaviors, autism diagnosis, child age, disease-
related characteristics (e.g., seizure frequency),
family income, family structure, and parental
education. Greater PS correlated with greater
child externalizing symptoms and poorer overall
child emotional/behavioral functioning.
Sickle cell disease
3–5 PIP Parents of adolescents reported greater PS

Barakat et or related to disease-related communication than
al., 2007b 12– parents of preschoolers. Lower income and more
18 pain episodes were associated with greater PS.
Skip to Main Content (68) Higher income and better family functioning
predicted less PS.
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12– PIP Greater disease-related PS was associated with

Barakat et 18 more frequent youth pain episodes, greater
al., 2008 (42) symptoms of youth depression and anxiety, and
poorer youth HRQOL. Disease-related PS
mediated relationship between pain frequency
and QOL.
12– PIP Greater disease-related PS at baseline was

Barakat et 18 associated with greater disease severity/health
al., 2007 (41) care utilization one year later.
ASD; CP; Down NR PSI/SF No group di erences in PS were observed.

Hall et al., Syndrome (25)
2012
12– PIP Greater disease-related PS correlated with less

Logan et 18 family income, more stressful life events, greater
al., 2002 (70) disease severity, and more routine and urgent
service uses.
0–21 30- item Monogamously married mothers reported less

Olley, (200) rating scale PS than non-married mothers or those in
Brieger, & polygamous marriages. Younger and Christian
Olley, mothers reported less PS. Mothers of older
1997 children and mothers of more than one children
with SCD reported greater PS.
3–5 PIP Greater di iculty of disease-related PS correlated

Tarazi, (26) with lower child motor/visuomotor scores.
Grant, Ely,
& Barakat,
2007
7–17 4-item Disease-related PS was unrelated to maternal

Thompson (78) rating scale psychological-distress.
et al., 1993
Multiple illnesses
8–18 PSI/SF Greater PS correlated with lower income, less

Bordeau et (200) maternal education, less child self-care
al., 2007 behaviors, greater parental overprotection, and
(Asthma; greater perceived child vulnerability. Greater PS
SkipCF;
to Main Content predicted less child self-care behaviors.
Diabetes)
Study Navigation
8–18 PSI/SF Greater PS correlated with greater parental

Carpentier (231) protective behaviors, and greater perceived child
et al., 2008 vulnerability.
(Asthma;
Diabetes;
CF)
c
8–13 PSI Parents of children with epilepsy had greater
Chiou & (102) overall PS. Less PS predicted better self-concept
Hsieh, in children with epilepsy.
2008a
(Asthma;
Epilepsy)
c
8–13 PSI Parent gender, child age, age of onset, illness
Chiou & (103) severity, and family SES did not predict PS.
Hsieh, Parents of children with epilepsy had greater
2008b overall PS.
(Asthma;
Epilepsy)
0–12 FSS Greater disease-specific stress predicted more

Driscoll et (195) depressive symptoms in caregivers of children
al., 2010 with diabetes and caregivers of children with CF.
(CF;
Diabetes)
0–18 PSI/SF Results support the use of the PSI/SF with

Fedele, (457) childhood chronic illness populations.
Grant,
Wolfe-
Chris-
tensen,
Mullins, &
Ryan, 2010
(Asthma;
Cancer; CF;
Diabetes;
SCD)
0–18 PSI/SF PS correlated with lower family income. Parents

Hullman et (425) of children with asthma or diabetes reported
al., 2010 greater PS than parents of children with cancer
Skip(Asthma;
to Main Content or CF.
Cancer; CF;
Diabetes)
Study Navigation
Hemophilia 1–18 PSI/SF Single mothers reported greater disease-related

Mullins et (368) PS than married mothers; income was found to
al., 2011 mediate this relationship.
(Asthma;
Cancer; CF;
Diabetes;
SCD)
8–12 PSI/SF Greater PS correlated with lower family income,

Mullins et (164) greater protective parenting behaviors, and
al., 2007 greater perceived child vulnerability. PS
(Asthma; predicted youth illness uncertainty.
Diabetes)
Note. PS = parenting stress; NR = not reported; PSI = Parenting Stress Index; PSI/SF = Parenting Stress
Index/Short Form; DD = developmental disabilities; PSS = Parental Stress Scale; CIPSQ = Chronic Illness
Parental Stress Questionnaire; QOL = quality of life; PIP = pediatric inventory for parents; S-PSI/SF = simplified
PSI/SF; CF = cystic fibrosis; CHD = congenital heart disease; FSS = Family Stress Scale; PAID-P = pediatric
assessment in diabetes-parent version; SIPA = Stress Index for Parents of Adolescents; ADS = appraisal of
diabetes scale; CP = cerebral palsy; ASD = autism spectrum disorder; HRQOL = health-related quality of life; SCD
= sickle cell disease; SES = socioeconomic status.
a
Child age range in years.
b
E ect size of study included in meta-analysis. A positive e ect size indicates a relationship between caregiver
status (caregiver of child with chronic illness) and parenting stress.
c
Translated instrument.
View Large
What measures are used to assess parenting stress in parents of

children with chronic illness?
A complete list of measures used to assess both general and disease-related parent/caregiver
stress can be found in Table I. The majority of the included studies assessed general parenting
stress using the generic 120-item PSI (Abidin, 1995) (n = 27) or the 36-item shortened
version (PSI/SF; Abidin, 1990) (n = 31). The PSI and PSI/SF measure stress within the parent–
child
Skip system.
to Main Parents indicate the degree to which they agree with a statement (e.g., “You feel
Content
trapped by your responsibilities as a parent.”) (Abidin, 1995). Both measures were translated
into other languages, such as Dutch (Rodenburg, Meijer, Dekovic, & Aldenkamp, 2007) and
Article Navigation
Chinese (e.g., Chiou & Hsieh, 2008a; Yeh, 2002, 2003).
Results of the review revealed that the 42-item Pediatric Inventory for Parents (PIP;
Streisand et al., 2001) was the most commonly used measure of disease-related parenting
stress (n = 18). The PIP asks parents to indicate the frequency at which disease-related
parenting stressor occurs, and the di culty-level of each stressor (Streisand et al., 2001).
The PIP has been used to assess disease-related parenting stress among parents of children
with cancer (e.g., Vrijmoet-Wiersma et al., 2010), diabetes (e.g., Hansen, Schwartz, Weiss-
brod, & Taylor, 2012; Lewin et al., 2005), and sickle cell disease (e.g., Barakat et al., 2007a,
2007b,).
Do reports of parenting stress di er among groups of parents (e.g.,

parents of children with various chronic conditions, parents of
healthy children)?
Meta-analysis was conducted to compare parenting stress for parents of children with
chronic illness to parenting stress for parents of healthy children. E ect sizes ranged from
−.30 to .88 across the 13 studies (see Table I). Homogeneity of e ect sizes was rejected (Q =
24.21, p ≤ .05), suggesting that a xed e ects model would not be appropriate (Lipsey & Wil-
son, 2001). In addition, examination of the coded methodological di erences across studies
did not suggest the presence of systematic di erences that could account for di erences in
e ect sizes. Results of the random e ects meta-analysis indicated that parents of children
with chronic illness reported greater general parenting stress than parents of healthy
children. The weighted mean e ect size fell in the small to medium range [d = .40, 95% CI =
.19–.61, p ≤ .0001]. The 13 studies included in the meta-analysis are described in Table I and
highlighted with an asterisk.
Using qualitative analysis, studies comparing parenting stress across illness populations
were examined. Hullmann et al. (2010) found that parents of children with asthma or diabetes
reported greater general parenting stress than parents of children with cancer or cystic
brosis. Chiou and Hsieh (2008a, b) found that parents of children with epilepsy endorsed
greater general parenting stress than parents of children with asthma. Disease-related
parenting stress, as measured by the PIP (Streisand et al., 2001), was similar among parents
of children with sickle cell disease (Barakat, Patterson et al., 2007a) and parents of children
with diabetes (Streisand, Swift, Wickmark, Chen, & Holmes., 2005). Parents of children with
sickle
Skip cellContent
to Main disease reported a greater frequency of disease-related parenting stress than
parents of children with cancer, but parents of children with cancer indicated that the
stressors related to caring for a child with cancer were more di cult, despite occurring less
frequently (Barakat, Patterson et al., 2007a, 2007b; Streisand et al., 2001; Streisand, Kazak, &
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Tercyak, 2003).
Do characteristics of the causal agent (i.e., illness parameters)

contribute to parenting stress?
Consistent with the Transactional Stress and Coping Model (Thompson et al., 1992, 1993;
Thompson & Gustafson, 1996), a qualitative analysis of associations between illness
parameters and parenting stress across pediatric illness populations was conducted. The
measures of parenting stress used and the results of each study are detailed in Table I.
Asthma. A number of studies examined whether disease-related factors were related to

parenting stress in caregivers of children with asthma (e.g., Celano, Klinnert, Holsey, & Mc-
Quaid, 2011; DeMore, Adams, Wilson, & Hogan, 2005). European American parents reported
that providing emotional support to their child with asthma was the most time-demanding
caregiving task, whereas African American parents reported that managing demands outside
of the home and the child’s treatment regimen were the most time-demanding tasks (Lee,
Parker, DuBose, Gwinn, & Logan, 2006). Celano et al. (2011) reported that better family
management of asthma across a number of domains (e.g., medication adherence, asthma
knowledge) was associated with less general parenting stress, while Joseph, Adams, Cottrell,
Hogan, & Wilson (2003) demonstrated a similar association between better adherence to dust
mite control and less parenting stress. However, DeMore et al. (2005) found that greater
medication (inhaler) adherence was associated with increased general parenting stress.
Variations in how adherence was assessed may account for these di erences. Age of asthma
onset, peak ow variability, and illness severity were unrelated to general parenting stress
(Chiou & Hsieh, 2008b; Ca rey-Craig, 2005), whereas the existence of sleep-disordered
breathing in addition to asthma was associated with greater general parenting stress (Fag-
nano et al., 2009).
Cancer. A number of cancer-related factors were found to be associated with general

parenting stress. For example, activity limitations due to cancer and on-treatment status,
were found to be associated with poor parental quality of life, which was mediated by
parenting stress (Litzelman, Catrine, Gangnon, & Witt, 2011). Greater paternal distress
related to the invasive procedures that a child must undergo (e.g., lumbar punctures, bone
marrow aspirations) was also found to be associated with greater general parenting stress for
fathers but not mothers (Kazak, Penati, Waibel, & Blackall, 1996). Disease-related parenting
stress
Skip wasContent
to Main greater for parents of children recently diagnosed with cancer and/or currently
on-treatment among a Netherlander sample of caregivers (Vrijmoet-Wiersma et al., 2010).
However, in a sample of Taiwanese caregivers, parents of children o -treatment endorsed
the greatest parenting stress (Yeh, 2002). Cultural di erences may account for these
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di erences, as Leavitt et al. (1999) found that Chinese caregivers of children with cancer
reported more isolation and less attention to emotional distress when compared with
Caucasian parents. These di erences in coping may result in sustained and increased distress
overtime.
Cystic Fibrosis. Fewer child self-care behaviors (Bourdeau, Mullins, Carpentier, Colletti, &
Wolfe-Christensen, 2007) were associated with greater general parenting stress in caregivers
of children with cystic brosis. Similarly, in a sample of caregivers of children ages 3–11
years, greater general parenting stress was associated with poorer adherence to the
treatment regimen (i.e., chest physiotherapy, dietary regimen; Eddy et al., 1998).
Furthermore, parents of children with cystic brosis reported that their children were more
demanding than healthy controls as measured by the PSI (Goldberg, Morris, Simmons,
Fowler, & Levison, 1990; Solomon & Breton, 1999). Although based on a general measure of
parenting stress, the treatment regimen for cystic brosis is demanding and time
consuming, which may be re ected by these ndings.
Diabetes. Results of the review were inconsistent with regards to associations between
parenting stress and youth metabolic control in children with diabetes. Greater general
parenting was associated with poorer metabolic control in children ranging in age from 10 to
17 years (Helgeson, Becker, Escobar, & Siminerio, 2012; Wu, Graves, Roberts, & Mitchell,
2010). Using illness-speci c parenting stress measures, a similar relationship was found in
caregivers of children ranging in age from 7 to 17 years (Hansen et al., 2012; Streisand et al.,
2005). However, in a younger sample (0–9 years), Stallwood (2005) found the reverse, with
greater disease-related parenting stress relating to better metabolic control. It may be that
higher disease-related parenting stress in caregivers of younger children is an indicator of
greater adherence behaviors, as these parents often take on more responsibility for disease
management. Consistent with this notion, parents with greater responsibility for their child’s
treatment regimen (Streisand et al., 2005) and those who performed nocturnal blood glucose
checks endorsed more parenting stress (Monaghan, Hilliard, Cogen, & Streisand, 2009).
Other diabetes-related factors related to greater parenting stress included less child self-care
behaviors (Bourdeau et al., 2007; Helgeson et al., 2012) and more frequent diabetes-related
child behavior problems (e.g., refusing blood glucose checks; Wysocki, Huxtable, Linscheid, &
Wayne, 1989). Diabetes duration (Mitchell et al., 2009; Mullins et al., 2004; Wu et al., 2010),
child age at diagnosis (Wu et al., 2010), illness severity (Mullins et al., 2004; Streisand et al.,
2005), and parental diabetes knowledge (Chisholm et al., 2007) were unrelated to parenting
stress.
Epilepsy. Greater negative impact of epilepsy on the family and child, and the presence of
intractable seizures were associated with greater general parenting stress (e.g., Cam eld,
Breau, & Cam eld, 2001; Shatla, El said Sayyah, Azzam, & Elsayed, 2011). Illness-related child
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behavior problems signi cantly contributed to greater parenting stress (Rodenburg et al.,
2007). Age of onset, illness severity, and seizure frequency were unrelated to parenting stress
(e.g., Cushner-Weinstein et al., 2008; Wirrell, Wood, Hamiwka, & Sherman., 2008).
Juvenile Rheumatoid Arthritis.Anthony, Bromberg, Gil, & Schanberg (2011) reported a

positive association between parenting stress and child’s pain intensity. Manuel (2001) noted
that child illness severity as measured by prescribed medications and functional status were
unrelated to parenting stress. Similar to ndings across other conditions (e.g., diabetes),
parenting stress was unrelated to illness duration (Iwamoto, Santos, Skare, & Spelling, 2008).
Sickle Cell Disease. More frequent pain episodes were associated with greater disease-related
parenting stress in caregivers of both young children (3–5 years) and adolescents (12–18
years) with sickle cell disease (Barakat, Patterson, Daniel, & Dampier, 2008; Barakat, Patter-
son et al., 2007b). Logan, Radcli e, & Smith-Whitley (2002) found that greater disease-
related parenting stress was associated with more frequent use of both routine and urgent
health care services. Communication with adolescents about sickle cell–related issues was
found to be a considerable source of stress for parents (Barakat, Patterson et al., 2007b).
Do parental illness-related cognitive appraisals relate to parenting

stress outcomes?
The Transactional Stress and Coping Model (Thompson et al., 1992, 1993; Thompson &
Gustafson, 1996) posits that illness-related cognitive appraisals are an important process for
understanding maternal adaptation to pediatric illness. A number of studies have examined
illness-related cognitive appraisals in caregivers of children with chronic illness. Across
illness populations (i.e., asthma, cystic brosis, diabetes), greater perceived child
vulnerability and overprotectiveness of the child, as reported by the parent, was associated
with increased general parenting stress (e.g., Bourdeau et al., 2007; Carpentier, Mullins,
Wolfe-Christensen, & Chaney, 2008; Mullins et al., 2007; Tluczek, McKechnie, & Brown,
2011). Caregivers of children with asthma who reported more negative perceptions about
their child’s health endorsed greater disease-speci c parenting stress (Svavarsdottir &
Rayens, 2003), whereas positive appraisals of the child’s illness situation attenuated the
relationship between disease-related parenting stress and general psychological distress
(e.g., depression, anxiety) in caregivers of children with arthritis (Manuel, 2001). In both
fathers and mothers of children with diabetes, lower parental self-e cacy about diabetes
management
Skip and greater fears of hypoglycemia were associated with greater disease-related
to Main Content
parenting stress (e.g., Mitchell et al., 2009; Patton, Dolan, Smith, Thomas, & Powers, 2011).
Do parent
Article coping mechanisms relate to parenting stress outcomes?
Navigation
Although methods of coping are a key component of the guiding theoretical framework, only
two studies examined relationships between parental coping styles and parenting stress.
Rodenburg et al. (2007) found that the use of more emotion-focused coping behaviors (e.g.,
avoidance) in caregivers was associated with greater general parenting stress in caregivers of
children with epilespy. The use of problem-focused coping behaviors was unrelated to
parenting stress (Rodenburg et al., 2007). Yeh (2003) found that parenting stress activated
the use of both emotion-focused (e.g., maintaining optimism) and problem-focused coping
behaviors (e.g., learning about illness, interacting with spouse, religious involvement) in
caregivers of children with cancer. Consistent with the Transactional Stress and Coping
Model (Thompson et al., 1992, 1993; Thompson & Gustafson, 1996), better family
functioning (e.g., positive communication, cohesiveness) was found to be associated with
less parenting stress among caregivers of children with cancer, epilepsy, and sickle cell
disease (e.g., Barakat, Patterson, et al., 2007b; Rodenburg et al., 2007; Streisand et al., 2003).
Does parenting stress relate to parent and child psychological

adjustment and health-related outcomes?
Owing to a limited number of longitudinal studies, it is di cult to ascertain the directionality
of associations between parenting stress and parent and child psychological and health-
related outcomes. For parents, greater general and disease-related parenting stress was
associated with psychological distress (e.g., depressive and anxiety symptomology) in
caregivers of children with arthritis (Manuel, 2001), cystic brosis (Driscoll et al., 2010;
Thompson et al., 1992), and diabetes (Driscoll et al., 2010; Hansen et al., 2012; Helgeson et al.,
2012; Patton et al., 2011; Streisand et al., 2008). Kazak and Barakat (1997) reported positive
associations between general parenting stress and parental state anxiety and posttraumatic
stress disorder symptoms in caregivers of children with cancer.
With regards to child psychological outcomes, disease-related parenting stress was

associated with more child depressive symptoms in children with juvenile rheumatoid
arthritis (Anthony et al., 2011), sickle cell disease (Barakat et al., 2008), and diabetes (Helge-
son et al., 2012; Hilliard, Monaghan, Cogen, & Streisand, 2010). Greater general parenting
stress was also associated with more depressive symptoms for children with juvenile
rheumatoid arthritis (Anthony et al., 2011) and poorer emotional, behavioral, and social
adjustment in children with cancer (Colletti et al., 2008; Roddenberry & Renk, 2008).
Similarly,
Skip greater general parenting stress in caregivers of children with cancer at baseline
to Main Content
predicted greater child internalizing and externalizing problems 1–2 years later (Fedele,
Mullins, Wolfe-Christensen, & Carpentier, 2011). With regards to health-related outcomes, in
a sickle cell disease sample, greater disease-related parenting stress at baseline was
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associated with greater disease severity and more frequent health care utilization 1 year later
(Barakat et al., 2007a).
Discussion
The current review sought to provide a more comprehensive understanding of parenting

stress across the childhood chronic illness literature. To our knowledge, this is the rst
systematic and quantitative review of parenting stress across childhood chronic illness
populations. A number of cross-cutting issues, such as familial impact, adherence, pain, and
school reintegration, are experienced by children with chronic illness and their families
(Power, 2006), underscoring the value of investigations that include various illness
populations. Overall, results of the meta-analytic review indicated that caregivers of children
with chronic illness endorse greater general parenting stress than caregivers of healthy
children. This interesting nding suggests that generic aspects of the caregiving experience,
not speci c to the child’s chronic illness, bring about greater stress for parents of children
with pediatric chronic illnesses. In addition to experiencing greater general parenting stress,
caregivers of children with chronic illness are also likely to experience illness-related
parenting stress (e.g., frequent clinic appointments, demanding treatment regimens).
Although the use of both generic and illness-speci c measures can be valuable and
recommended (La Greca & Lemanek, 1996), only four studies were identi ed that used both
types of measures (Modi, 2009; Streisand et al., 2001; Vrijmoet-Wiersma et al., 2010; Wolfe-
Christensen et al., 2010). A number of studies that used generic measures of parenting stress
did not nd associations between parenting stress and various illness parameters (e.g.,
Chisholm et al., 2007; Nabhan et al., 2009). However, studies using illness-speci c measures
of parenting stress, such as the PIP (Streisand et al., 2001), often found signi cant
associations between disease-related parenting stress and illness parameters (e.g., Hansen et
al., 2012; Muller-Gode roy, Treichel, & Wagner, 2009). Di erences in the type of parenting
stress measured (general vs. illness-speci c) may explain some of the inconsistencies.
With regards to illness parameters, qualitative analysis across illness populations suggested
that general and disease-related parenting stress was associated with greater parental
responsibility for treatment management and/or less child self-care behaviors (e.g., Bordeau
et al., 2007; Helgeson et al., 2012). This highlights the importance of a teamwork approach to
disease
Skip management.
to Main Content It may be that parents who assume much of the responsibility for care
are overburdened by the demands. However, if a child takes on all responsibility, parents may
nd themselves worried about whether or not their child is correctly adhering to the
treatment regimen. Encouraging parents and children to collaboratively manage treatment

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demands may decrease parenting stress and increase adherence.
General and disease-related parenting stress was unrelated to illness duration (e.g., Mitchell
et al., 2009; Wu et al., 2010) and illness severity (e.g., Streisand et al., 2005) across various
illness populations. However, more frequent and/or intense child pain episodes were related
to parenting stress in both caregivers of children with arthritis and sickle cell disease (e.g.,
Anthony et al., 2011; Barakat et al., 2008). It may be that parents feel particularly helpless
when their child is in pain. E orts that speci cally facilitate parental coping with child pain
may be an e ective and directive intervention target that can be applied across illness
populations. As more investigations are conducted regarding the relationships between
various illness parameters and parenting stress, future meta-analytic investigations would
advance our understanding of these relationships.
Consistent with the theoretical framework that guided some of the predetermined questions,
the current review supported the role of cognitive processes. For example, while negative
perceptions about a child’s illness situation related to greater disease-related parenting
stress (Svavarsdottir & Rayens, 2003), positive appraisals served as a protective factor
(Manuel, 2001). Consistent with associations found between “vulnerable child syndrome”
(i.e., parents perceive child to be vulnerable; Green & Solnit, 1964) and family distress (Green,
1986), parental perceptions of child vulnerability and feelings of insu ciency with regards to
one’s ability to manage their child’s illness related to increased general and disease-related
parenting stress (e.g., Mitchell et al., 2009; Mullins et al., 2004; Tluczek et al., 2011).
The review revealed a paucity of research on coping mechanisms and both general and
disease-related parenting stress, despite the importance of the role of coping mechanisms in
stress and coping theories (Lazarus & Folkman, 1984; Thompson et al., 1992; Thompson &
Gustafson, 1996). Notably, in concordance with the guiding theoretical framework, one study
demonstrated that childhood chronic illness appears to activate the use of coping
mechanisms (Yeh, 2003). Although de nitive conclusions cannot be made based on the
results of a single study, emotion-focused coping mechanisms (e.g., avoidance) related to
greater general parenting stress (Rodenburg et al., 2007). It may be that although the
avoidance of negative feelings associated with a child’s illness provides some relief, the
consequences of avoidance behaviors induce greater stressors (e.g., adherence problems).
Although based largely on correlational studies, results of the review provided strong
evidence that increased general and disease-related parenting stress is associated with
adverse
Skip to Mainpsychological
Content adjustment in caregivers and children (e.g., Hilliard et al., 2010; Kazak
& Barakat, 1997). Parenting stress may also contribute to poorer child health-related
outcomes (Barakat et al., 2007a). In an e ort to promote positive health and psychological
outcomes in children with chronic illness, parenting stress can serve as a modi able
Article Navigation
intervention target. This review highlights the importance of future intervention e orts
aimed at preventing or reducing parenting stress among caregivers of children with chronic
illness. However, few interventions have been designed to address this need. Notably, Mon-
aghan, Hilliard, Cogen, & Streisand. (2011) developed a brief, ve-session, phone-based
intervention to support parents of young children with diabetes, which decreased disease-
related parenting stress. As the eld moves forward and considers the use of targeted
interventions to decrease parenting stress in caregivers of children with chronic illness, it
will be advantageous to build on the work of more generalized interventions for promoting
parental coping with childhood chronic illness (e.g., Ho et al., 2005; Kazak et al., 2005).
Results of this review should be interpreted in light of its limitations. Some studies may not
have been identi ed through the search methods used. Attempts were made to identify all
relevant research; however, variations in the terminology used to describe parenting stress
across a broad and expansive literature posed challenges for identifying all studies meeting
the inclusion criteria. Additionally, inclusion criteria were strict, limiting the review to
studies that included a quantitative measure of general and/or disease-related
parenting/caregiving stress. Studies that qualitatively assessed parenting stress (e.g.,
interviews), family stress (e.g., family burden, impact on family), life stress, or other
important parental constructs (e.g., parental negative a ectivity) were not included. Findings
from studies assessing these domains are important to understanding parenting stress
among caregivers of children with chronic illness. For example, results of qualitative studies
revealed that others’ misunderstandings about a child’s illness (Sallfors & Hallberg, 2003)
and uncertainty about illness course (Filigno et al., 2012) contributed to parenting stress.
Lastly, publication bias may have limited the results of the meta-analysis; thus, in
accordance with the Cochrane Collaboration (Higgins & Green, 2011), e ect sizes and CIs
were emphasized when interpreting results.
Overall, this literature is largely limited in its ability to determine causality. The many cross-
sectional investigations have provided a sound foundation on which future longitudinal work
can be designed. Continued examination of the role of cognitive appraisals and coping
mechanisms will help to better inform future interventions. Lastly, while a signi cant
strength of this literature is the diversity of populations examined as evidenced by the
inclusion of studies across illness populations and from 12 di erent countries, additional
investigations of parenting stress in caregivers of children with juvenile rheumatoid arthritis,
and other chronic conditions, such as kidney disease and irritable bowel syndrome, are
warranted.
Acknowledgments
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We are grateful to the members of the Pediatric Psychology Writer’s Workshop at Case
Western Reserve University for their helpful comments.
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31/8/2018 Parenting Stress Among Caregivers of Children With Chronic Illness: A Systematic Review | Journal of Pediatric Psychology | Oxford

logy | Oxford Academic

Parenting Stress Among Caregivers of Children With

Keywords: chronic illness, meta-analysis, parenting stress, systematic review

Topic: chronic disease, parenting behavior

stress.” The second stem group included “child

Quantitative Review (Meta-Analysis). Meta-analysis was considered for questions 2–6. It

To determine whether or not reports of general parenting stress di er among caregivers of

8–16 Hassles and Greater PS predicted child depressive symptoms

NR Caregiver PS was unrelated to parent education level,

5–16 4-item Greater disease-related PS correlated with

Healthy 10– PSI No di erences in PS were observed. PS was

8–13 PSI PS was greater for mothers of children with

8–13 PSI/SF Less PS was associated with better illness

8–13 PSI/SF PS declined for caregivers in both the home-

6–12 PSI/SF Greater PS correlated with greater medication

4–10 PSI (5 Parents of children with asthma and sleep-

ADHD; DD; HIV; NR PSI Parents of children with ADHD or DD reported

2–18 PSI/SF Greater PS correlated with poorer mite control

6–12 Care of My European American caregivers reported that

Healthy 6–12 PSI No group di erences in PS were observed (ES =

0–6 Care of My Providing emotional support to child was the

0–6 Care of My No di erences in PS were found between

Eczema; Healthy 7–12 PSI No group di erences in PS were observed. Child

2–12 PSI/SF Greater PS predicted poorer child behavioral,

2–10 PSI/SF Greater PS at baseline predicted at baseline more

0–18 PSS Greater PS correlated with more avoidant and

NR PSI/SF Greater PS correlated with greater parental state

NR PSI/SF Greater PS was correlated with procedural

3–20 CIPSQ Disease-related PS did not relate to parent

NR Caregiver PS mediated the relationship between child

NR PSI/SF Greater maternal PS correlated with poorer child

2–16 4- item Greater PS correlated with less positive

0–21 PIP; PSI/SF Greater disease-related PS correlated with

0–21 PIP Greater disease-related PS was related to poorer

2–12 Care of My Only general PS correlated with greater child

Healthy 1–10 PSI No group di erences in total PS scores observed

Healthy 1–7 PSI PS was greater for caregivers of children with CF

0–18 PSI PS was unrelated to parent and youth report of

CHD; Healthy 0–2 PSI Greater PS experienced by fathers correlated

3–11 PSI/SF Greater PS correlated with poorer compliance to

CHD; Healthy 4 PSI PS predicted child behavior problems

NR PSI; Compared with norms, PS was greater for

Healthy 2–6 FSS Mothers of children with CF reported greater PS

Healthy 1–2 PSI A greater percentage of parents of children with

7–17 4-item Greater disease-related PS correlated with

CF carriers; <6 PSI Greater PS was associated with greater perceived

2–8 PSI/SF PS was unrelated to diabetes knowledge,

13– PAID-P Perceived illness-specific PS mediated the

Skip to Main Content

7–14 PIP Mothers reported greater frequency of disease-

10– Parental PS predicted greater caregiver depressive

2–6 PIP Greater disease-related PS was associated with

1–6 PSI/SF No changes in PS levels were observed amongst

12– SIPA Parents of adolescents in the

DSD NR PSI/SF No group di erences in PS were observed.

8–19 PIP Greater disease-related PS correlated with

2–6 PIP Greater disease-related paternal PS correlated

2–6 PIP Parents who sometimes performed nocturnal

2–5 PIP A telephone-based supportive intervention for

8–12 PSI/SF Greater PS correlated with greater perceived

0–5 PSI No di erences in PS were found between parents

2–7 PIP Greater PS correlated with greater parental fears