Received: 13 July 2017 Revised: 20 November 2017 Accepted: 21 November 2017

DOI: 10.1111/jspn.12205

ORIGINAL ARTICLE

Weight status, diet quality, perceived stress, and functional

health of caregivers of children with autism spectrum disorder

Xiaoyin Sara Li1 Jennifer A. Pinto-Martin2,3 Aleda Thompson2 Jesse Chittams2

Tanja V.E. Kral2,4

1 Master of Public Health Program, University

of Pennsylvania Perelman School of Medicine, Abstract

Philadelphia, Pennyslvania, USA Purpose: Caring for children with autism spectrum disorder (ASD) can be highly demanding and
2 Department of Biobehavioral Health Sciences,
can put significant strain on caregivers. To date, little is known about the extent to which care-
University of Pennsylvania School of Nursing, givers of children with ASD experience increased levels of stress which may adversely affect
Philadelphia, Pennyslvania, USA
health outcomes. The purpose of this secondary analysis was to compare caregivers of children
3 Department of Biostatistics and Epidemiology,

University of Pennsylvania Perelman School of

Medicine, Philadelphia, PA
4 Department of Psychiatry, University of Penn-
sylvania Perelman School of Medicine, Philadel-
phia, PA
Correspondence
Tanja V.E. Kral, Ph.D., Department of Biobe-
havioral Health Sciences, School of Nursing
and Perelman School of Medicine, 308 Claire
M. Fagin Hall, 418 Curie Blvd, Philadelphia, PA
19104-4217, USA.
Email: tkral@nursing.upenn.edu
with ASD and caregivers of typically developing children (TDC) in weight status, diet quality, per-
ceived stress related to the parenting role, and functional health and well-being.
Design and methods: Caregivers of 25 children with ASD and 30 TDC completed the 2005 Block
Food Frequency Questionnaire, the 36-item Short Form of the Parenting Stress Index (PSI/SF),
and the Short Form Health Survey (SF-36) and had their heights and weights measured during an
onsite visit. Diet quality was assessed using the Healthy Eating Index (HEI)-2010 and its dietary
components and conformance to the 2010 Dietary Guidelines for Americans.
Results: ASD caregivers did not differ significantly from TDC caregivers in body mass index or
overweight/obesity prevalence (p ≥ .28), even when controlling for covariates. In univariate anal-
yses, ASD caregivers consumed significantly fewer empty calories from solid fats, alcohol, and
added sugars than TDC caregivers (p = .03), but they did not differ significantly in any other dietary
outcomes including nutrient adequacy (p ≥ .10) and mean total HEI scores (p = .20). ASD care-
givers, when compared to TDC caregivers, reported significantly greater parenting stress for the
subscales difficult child and parent–child dysfunctional interaction as well as total stress (p < .001).
In addition, 56% of ASD caregivers compared with 6.7% of TDC caregivers showed clinically signif-
icant levels of stress (p < .0001); a finding which remained statistically significant when controlling
for covariates. ASD and TDC caregivers did not differ significantly in any SF-36 health domains
related to functional health and well-being (p ≥ .10).

Practice implications: Despite higher reported levels of stress, ASD caregivers did not differ sig-
nificantly from TDC caregivers in diet- and health-related outcomes. Nurses and other health pro-
fessionals should use comprehensive screening tools to assess overall caregiver stress and levels
of resilience.

KEYWORDS
autism spectrum disorder, caregivers, diet quality, functional health, stress

1 INTRODUCTION on caregivers. In addition, high out-of-pocket healthcare expenses

Caring for children with autism spectrum disorder (ASD) can be chal-
lenging and requires much time, effort, and patience on the part of
caregivers. Children with ASD exhibit a range of social and communi-
cation impairments, restrictive and repetitive behaviors, tantrums, and
sleep difficulties (Aman, 2004), all of which can put significant strain
can contribute to financial stress among families. Emerging evidence
shows that caregivers of children with ASD experience high levels of
burden (Stuart & McGrew, 2009), anxiety, and depression (Miodrag &
Hodapp, 2010). It has also been suggested that caregivers, and moth-
ers, in particular, of children with ASD can experience levels of chronic
stress that are comparable to those experienced by combat soldiers,

J Spec Pediatr Nurs. 2017; wileyonlinelibrary.com/journal/jspn 

c 2017 Wiley Periodicals, Inc. 1 of 9
https://doi.org/10.1111/jspn.12205
2 of 9
which can place caregivers at risk for serious health risks (Whitmore,
2016). To date, less is known about the extent to which perceived
stress related to the parenting role may affect caregivers’ functional
health and well-being.
Increased chronic levels of stress have been implicated in the devel-
opment of a series of health complications, including, but not limited
to, obesity (Bartoli et al., 2015; Hewagalamulage, Lee, Clarke, & Henry,
2016), heart disease (Kivimaki & Kawachi, 2015; Murphy, Cohn, &
Loria, 2016), diabetes (Kelly & Ismail, 2015; Pouwer, Kupper, & Adri-
aanse, 2010), gastrointestinal problems (Konturek, Brzozowski, & Kon-
turek, 2011), depression (Juruena, 2014; Moriam & Sobhani, 2013),
and asthma (Rod, Kristensen, Lange, Prescott, & Diderichsen, 2012).
Exposure to acute or chronic levels of stress has the potential to
alter neuroendocrine responses (e.g., glucocorticoid synthesis) which
can affect appetite, food intake, body weight, and storage of body fat
(Ulrich-Lai, Fulton, Wilson, Petrovich, & Rinaman, 2015). Recent data
from a population-based cohort study of 5,077 Hispanic/Latino adults
showed that increased levels of chronic and recent perceived stress
were associated with higher energy intake, lower diet quality, higher
odds of obesity, and greater waist circumference and percentage body
fat (Isasi et al., 2015). To date, little is known about the extent to which
caregivers of children with ASD may differ from caregivers of typically
developing children (TDC) in diet- and weight-related outcomes and
functional health.
The aim of this analysis was to compare caregivers of children with
ASD and caregivers of TDC in weight status, diet quality, perceived
stress related to the parenting role, and functional health and well-
being. We hypothesized that caregivers of children with ASD would
show significantly higher rates of overweight and obesity, poorer diet
quality, higher levels of perceived stress, and lower functional health
and well-being compared to caregivers of TDC.
2 METHODS
2.1 Design
This secondary analysis used data from a cross-sectional pilot study
to compare caregivers of 4- to 6-year-old children with ASD and care-
givers of TDC on the following measurements: weight status, diet qual-
ity, perceived parenting stress, and functional health and well-being.
Caregivers were asked to complete a series of questionnaires and par-
ticipated in height and weight measurements.
2.2 Sample
Caregivers in this analysis were participants in a cross-sectional study
designed to compare parent feeding practices and eating behaviors of
children with ASD and TDC (Kral et al., 2015). Details about subject
recruitment and child eligibility criteria for the main study were pro-
vided previously (Kral et al., 2015). The sample for this secondary anal-
ysis consisted of 25 primary caregivers of children with ASD (referred
to as ‘ASD caregivers’) and 30 primary caregivers of TDC (referred to
as ‘TDC caregivers’) living in the greater Philadelphia area. A primary
LI ET AL .
caregiver was defined as the person responsible for grocery shopping,
feeding, and daily care of the child. Caregivers who were not the legal
guardian of the child and/or did not reside in the child's household
were excluded from participating in the study. The Institutional Review
Boards (IRBs) of both the University of Pennsylvania and the Children's
Hospital of Philadelphia (CHOP) approved this study.
2.3 Assessment of caregiver height and weight
Trained research staff measured caregivers’ heights and weights dur-
ing an onsite visit to either the Center for Autism Research at CHOP
(ASD caregivers) or the Center for Weight and Eating Disorders at
the University of Pennsylvania (TDC caregivers). Caregivers height
and weight were assessed in duplicate with subjects wearing light
clothing (shoes removed) using a stadiometer (accurate to 0.1 cm)
and digital scale (accurate to 0.1 kg), respectively. Body mass index
(BMI) was computed as weight (kg) divided by height (m) squared
and caregivers were categorized into four weight categories: under-
weight (BMI < 18.5 kg/m2 ), normal-weight (BMI 18.5–24.9 kg/m2 ),
overweight (BMI 25.0–29.9 kg/m2 ), or obese (BMI ≥ 30 kg/m2 ), respec-
tively (World Health Organization, 2004).
2.4 Instruments
2.4.1 Assessment of caregiver dietary intake
Caregiver dietary intake was assessed using the 2005 Block Food
Frequency Questionnaire (FFQ), which has previously shown accept-
able validity when compared to multiple diet records (correla-
tions for most nutrients: 0.5–0.6) and is suitable for studying
diet and disease relationships (Block, Woods, Potosky, & Clifford,
1990; Lissner, 2002). This questionnaire estimates usual and cus-
tomary intake of ∼110 food and beverage items, nutrients, and
food groups over a period of 12 months (https://www.nutritionquest.
com/assessment/list-of-questionnaires-and-screeners/). Dietary out-
come variables for this study included the 2010 Healthy Eating Index
(HEI) and its dietary components and adequacy of habitual intake of
15 selected nutrients (i.e., fiber, iron, calcium, magnesium, potassium,
Vitamin D, Vitamin E, Vitamin C, Vitamin A, Vitamin B6, folate, zinc, thi-
amin, riboflavin, phosphorous).
The HEI-2010 is a measure of diet quality and assesses confor-
mance to the 2010 Dietary Guidelines for Americans. It is composed
of the following 12 components: 1) total fruit (includes fruit juice);
2) whole fruit (includes all forms except juice); 3) total vegetables
(includes any beans and peas not counted as total protein foods); 4)
greens and beans (includes any beans and peas not counted as total
protein foods); 5) whole grains; 6) dairy (includes all milk products, such
as fluid milk, yogurt, cheese and fortified soy beverages); 7) total pro-
tein foods; 8) seafood and plant proteins (includes seafood, nuts, seeds,
soy products (other than beverages) as well as beans and peas counted
as total protein foods); 9) fatty acids (ratio of poly- and monounsat-
urated fatty acids to saturated fatty acids); 10) refined grains; 11)
sodium; and 12) empty calories (calories from solid fats, alcohol, and
added sugars). Higher scores for total fruit, whole fruit, total vegeta-
bles, greens and beans, whole grains, dairy, total protein foods, seafood
LI ET AL .
and plant proteins, and fatty acids indicate higher consumption; higher
scores for refined grains, sodium, and empty calories indicate lower
consumption. The total HEI-2010 score represents the sum of the com-
ponent scores. The HEI-2010 total score has demonstrated adequate
reliability (Cronbach's coefficient 𝛼: 0.68) as well as construct and con-
current criterion-related validity (Guenther et al., 2014).
2.4.2 Assessment of parenting stress
Caregiver stress was assessed using the 36-item short form of the Par-
enting Stress Index (PSI/SF) (Abidin, 1995). This questionnaire asks
caregivers to indicate on a five-point scale ranging from strongly agree
to strongly disagree the extent to which statements describe their rela-
tionship with their child. The instrument yields the following sub-
scales: 1) parental distress: stress attributable to caregiver's personal
distress; 2) difficult child: distress related to the child; 3) parent–child
dysfunctional interaction: relational distress between the caregiver and
child; and 4) total stress: stress parent is experiencing in his/her role
as a parent. For all scales, higher scores indicate higher levels of par-
enting stress. Psychometric testing of the PSI/SF showed high test–
retest reliability for total stress (reliability coefficient: 0.84; 𝛼: 0.91),
parental distress (reliability coefficient: 0.85; 𝛼: 0.87), parent–child
dysfunctional interaction (reliability coefficient: 0.68; 𝛼: 0.80), and dif-
ficult child (reliability coefficient: 0.78; 𝛼: 0.85) and acceptable valid-
ity when compared with the full-length instrument for total stress
(validity coefficient: 0.94), child domain score (validity coefficient:
0.87), and parent domain score (validity coefficient: 0.92), respectively
(Abidin, 1995).
2.4.3 Assessment of caregiver functional health
and well-being
Caregivers were also asked to complete the Short Form Health Survey
(SF-36) (J. E. Ware, Kosinski, & Gandek, 2000), which is a validated 36-
item health survey of functional health and well-being. It measures per-
ceived health across the following health domains: 1) physical function-
ing: presence and extent of physical limitations; 2) role-physical: phys-
ical health-related role limitations such as difficult performing work;
3) bodily pain: intensity of bodily pain, extent of interference with nor-
mal work activities due to pain; 4) general health: rating of health (excel-
lent to poor), views and expectations of respondent's health; 5) vital-
ity: energy level and fatigue, captures differences in subjective well-
being; 6) social functioning: health-related effects on quantity and qual-
ity of social activities; 7) role-emotional: mental health-related role lim-
itations as a result of emotional problems; 8) mental health: anxiety,
depression, loss of behavioral/emotional control, psychological well-
being; 9) physical component score: includes physical function, role-
physical, bodily pain, and general health; and 10) mental component
score: includes vitality, social functioning, role emotional, and mental
health. Higher scores (range 0–100) indicate better perceived health.
All component and summary scores are normalized to a mean of 50
with a SD of 10. Specifically, data are scored in relation to 1998 U.S.
general population norms where scores < 50 are interpreted as being
below the U.S. general population norm and scores > 50 are inter-
preted as being above the U.S. general population norm. The SF-36 has
3 of 9
shown adequate reliability (median reliability coefficients for each of 8
scales ≥0.80) and empirical validity (80–90% and has been normed to
large representative samples, including caregivers (Rodrigue, Kanasky,
Marhefka, Perri, & Baz, 2001; J. E. Ware, Jr., 2000).
2.5 Analysis plan
Two statistical software systems (SAS System for Windows, Version
9.4 SAS Institute, Cary, NC and SPSS, Version 23; SPSS Inc., Chicago, IL)
were used for data analysis. Testing for normality of continuous vari-
ables was performed using the Shapiro–Wilk test, distribution plots,
and summary statistics. To compare ASD and TDC caregivers in weight
status, dietary intake, perceived stress, and functional health and well-
being (Aim 1), independent samples t-tests were used for normally
distributed continuous variables, nonparametric tests were used for
non-normally distributed continuous variables, and Chi-Square and
Fisher's exact tests were used for categorical variables. To control for
between-group differences in caregiver race, marital status, education,
and household income, we added these covariates to general linear
regression models, both individually and in combination, for all out-
comes. Descriptive statistics are presented as means ± standard devi-
ations (SDs) for continuous variables or as percentages for categorical
variables unless otherwise indicated. P-values < .05 were considered
significant for all tests.
3 RESULTS
3.1 Caregiver demographic and anthropometric
characteristics
Table 1 depicts the demographic and anthropometric characteristics
for caregivers by group. The majority (∼80%) of participating care-
givers for both groups were mothers. ASD caregivers were signifi-
cantly older than TDC caregivers (p = .02). A significantly greater
proportion of ASD caregivers were married, had a college degree or
above, and a higher household income when compared to TDC care-
givers. There also was a significant group difference in caregivers’ race,
with a higher proportion of ASD caregivers identifying as Caucasian
(60%), while the majority of TDC caregivers identified as African Amer-
ican (87%; p < .0001). ASD caregivers did not differ significantly from
TDC caregivers in any of the anthropometric characteristics, including
height, weight, BMI, or the proportion of overweight/obesity (p > .28),
even when controlling for covariates.
3.2 Caregiver dietary intake
Table 2 depicts dietary variables related to the HEI-2010 and its com-
ponents for caregivers in both groups. The mean total HEI scores (61.9
± 2.6 vs. 57.4 ± 2.4; p = .20) did not differ significantly between groups
and are comparable with the total HEI score for the U.S. total popula-
tion (59.00 ± 0.95) (https://www.cnpp.usda.gov/healthyeatingindex).
With respect to the individual dietary components of the
HEI, univariate analyses showed ASD caregivers consuming
4 of 9 LI ET AL .

TA B L E 1 Demographic and anthropometric characteristics of caregivers of children with Autism Spectrum Disorders (ASD) and typically
developing children (TDC)

ASD Caregivers TDC Caregivers

Variables N = 25 N = 30 p-valuea
Type of caregiver, n (%)
Mother 20 (80%) 25 (83%)
Father 2 (8%) 2 (7%)
Other 3 (12%) 3 (10%) 1.00
Age (years), M ± SD 38.6 ± 5.8 34.7 ± 6.1 .02*
Race, n (%)
Asian 3 (12%) 0 (0%)
African American 7 (28%) 26 (87%)
Caucasian 15 (60%) 2 (6.5%)
Multiracial 0 (0%) 2 (6.5%) < .0001*
Ethnicity, n (%)
Hispanic 2 (8%) 1 (3%)
Non-Hispanic 23 (92%) 29 (97%) .59
Marital Status, n (%)
Single 4 (16%) 14 (47%)
Married 20 (80%) 12 (40%)
Divorced, separated, widowed 1 (4%) 4 (13%) .01*
College degree or above (n (%) yes) b 17 (71%) 8 (26%) .01*
Household income, n (%)b
< $25,000 4 (17%) 14 (47%)
$25,000 – $100,000 10 (41%) 14 (47%)
> $100,000 10 (42%) 1 (3%) .001*
Height (cm), M ± SD 166.3 ± 9.2 164.7 ± 6.6 .45
Weight (kg), M ± SD 78.6 ± 21.3 83.8 ± 18.3 .34
BMI (kg/mb ), M ± SD 28.6 ± 8.5 31.1 ± 7.5 .28
Weight status, n (%) b
Underweight 1 (4.0%) 0
Normal-weight 10 (40%) 8 (27%)
Overweight 6 (24%) 6 (20%)
Obese 7 (28%) 14 (47%) .36

Note: M, mean; SD, standard deviation

a
Univariate independent two sample t-tests for normally distributed continuous variables, nonparametric Wilcoxon Rank-Sum tests for non-normally
distributed variables, and Chi-Square or nonparametric Fisher's Exact tests for categorical variables.
b
Missing degree information for 4 TDC caregivers; missing income information for one TDC caregiver; missing weight status information for one ASD
caregiver and 2 TDC caregivers.
*Significant at p < .050

significantly fewer empty calories when compared to TDC care-
givers (p = .03). This difference, however, became nonsignificant
when adjusting for covariates. Several between-group differ-
ences in HEI components that previously were nonsignificant
became statistically significant when adding covariates (noted
in parentheses) to the model. These components included total
fruit (caregiver race: p = .04), whole grains (caregiver education:
p = .04), total protein foods (caregiver marital status: p = .03; care-
giver education: p = .04; caregiver income: p = .02; all covariates:
p = .04); and sodium (caregiver education: p = .03), respectively. The
results of all other components did not change when controlling for
covariates.
A high proportion of caregivers in both groups did not meet the
estimated average requirements (EAR) for the majority of nutrients
(Figure 1). Dietary inadequacies were especially high for the nutrients
fiber, calcium, potassium, vitamin D, vitamin E, and folate. When adjust-
ing for caregiver education, the previously nonsignificant between-
group difference in vitamin C intake became borderline significant
(p = .059). The results of all other components did not change when
controlling for covariates.
LI ET AL . 5 of 9

TA B L E 2 Mean (± SEM) Healthy Eating Index (HEI)-2010 and its components for caregivers of children with autism spectrum disorder (ASD)
and typically developing children (TDC)

ASD Caregivers TDC Caregivers

HEI-2010 Dietary Component (maximum score) N = 25 N = 30 p-value
Total HEI score (100), M ± SEM 61.9 ± 2.6 57.4 ± 2.4 .20
Total fruit (5), M ± SEM 3.5 ± 0.3 3.8 ± 0.3 .49
Whole fruit (5), M ± SEM 3.8 ± 0.3 3.6 ± 0.3 .77
Total vegetables (5), M ± SEM 3.8 ± 0.2 3.4 ± 0.2 .26
Greens and beans (5), M ± SEM 4.0 ± 0.3 3.7 ± 0.3 .31
Whole grains (10), M ± SEM 4.6 ± 0.5 3.3 ± 0.5 .07
Dairy (10), M ± SEM 5.1 ± 0.4 4.4 ± 0.4 .25
Total protein foods (5), M ± SEM 4.7 ± 0.1 4.3 ± 0.2 .70
Seafood and plant proteins (5), M ± SEM 3.4 ± 0.3 3.7 ± 0.3 .48
Fatty acids (10), M ± SEM 5.5 ± 0.5 6.0 ± 0.4 .39
Refined grains (10), M ± SEM 7.9 ± 0.5 7.4 ± 0.4 .41
Sodium (10), M ± SEM 3.4 ± 0.5 4.2 ± 0.4 .19
Empty calories (20), M ± SEM 12.4 ± 0.9 9.5 ± 0.9 .03*

Note: M, mean; SEM, standard error of mean

*Significant at p < .050

3.3 Caregiver parenting stress
Figure 2 depicts caregivers’ perceived parenting stress across the var-
ious parenting domains. ASD caregivers reported significantly greater
parenting stress for the subscales Difficult child and parent–child dys-
functional interaction as well as total stress when compared to TDC
caregivers (p < .001). The results did not change when controlling
for covariates. Groups also significantly differed in the proportion
of caregivers who experienced clinically significant levels of stress
(total stress raw score ≥ 90 (Abidin, 1995). Specifically, 56% of ASD
caregivers compared with 6.7% of TDC caregivers showed clinically
significant levels of stress (p < .0001); a finding which remained sta-
tistically significant when controlling for covariates.
3.4 Caregiver functional health and well-being
Figure 3 depicts the functional health and well-being of caregivers in
the two groups across the different health domains. ASD and TDC
caregivers did not differ significantly in any health domains (p ≥ .10).
The results did not change when controlling for covariates.

F I G U R E 1 Percentage of caregivers of children with autism spectrum disorders (ASD; n = 25) and typically developing children (TDC; n = 30)
with habitual intakes not meeting the EAR for nutrients. a Adequate intake (AI)
6 of 9
FIGURE 2 Parenting stress (mean ± SEM) in caregivers of children
with autism spectrum disorders (ASD; n = 25) and typically develop-
ing children (TDC; n = 30). DC = difficult child; P–CDI = parent–child
dysfunctional interaction; DR = defensive responding; PD = parental
distress; Total = total stress
4 DISCUSSION
The findings from this analysis provided further evidence that care-
givers of children with ASD experienced high levels of parenting stress,
with 56% of them reaching clinically significant levels. Despite signifi-
cantly higher levels of reported parenting stress, however, caregivers
of children with ASD showed rates of overweight and obesity, diet
quality, and perceived functional health and well-being that were simi-
lar to caregivers of TDC.
This analysis aimed to compare caregivers of children with ASD
and caregivers of TDC in weight- and nutrition-related outcomes. The
two caregiver groups did not significantly differ in body weight, BMI,
or the proportion of caregivers who were considered overweight or
obese. Although not statistically significant, it is noteworthy that fewer
caregivers of children with ASD were considered overweight or obese
(52%) compared with caregivers of TDC (67%) or national prevalence
rates of overweight and obesity among US adults (70.7%) (National
F I G U R E 3 Functional health and well-being (mean ± SEM) in caregivers of children with Autism spectrum disorders (ASD; n = 25) and typically
developing children (TDC; n = 30). PF = physical functioning; RP = role physical; BP = bodily pain; GH = general health; V = vitality; SF = social
functioning; RE = role-emotional; MH = mental health; PCS = physical component score; MCS = mental component score
LI ET AL .
Center for Health Statistics, 2016). This finding stands in contrast to
what we originally had hypothesized and suggests that despite high
levels of perceived parenting stress, caregivers of children with ASD
did not show higher rates of overweight or obesity when compared
to TDC caregivers. With respect to diet quality, our data showed that
caregivers of children with ASD consumed a diet of similar, in some
aspects even better quality (i.e., fewer empty calories), when compared
to caregivers of TDC. However, it is important to note that a high pro-
portion of caregivers in both groups did not meet requirements for the
majority of nutrients and demographic confounders accounted for dif-
ferences in intake of a number of nutrients.
Another aim of this study was to compare caregivers of children
with ASD and caregivers of TDC in parenting stress and functional
health and well-being. Our findings confirmed that caregivers of chil-
dren with ASD experienced high levels of parenting stress with over
half of the sample reaching clinically significant levels of stress. Our
findings are in line with findings from many other studies which report
high levels of caregiver stress resulting from, for example, an autism
diagnosis, challenging child behaviors, stigma and marginalization, and
financial burden (Bonis, 2016). High levels of parenting stress, specif-
ically, have also been reported in multiple studies (Ekas & Whitman,
2011; Hill-Chapman, Herzog, & Maduro, 2013). A study by Giovagnoli
and colleagues (Giovagnoli et al., 2015) reported statistically signifi-
cant between-group differences for all PSI-SF subscales and the total
score among caregivers of children with ASD and TDC. A significantly
higher proportion of caregivers of children with ASD (34%) reported
parenting stress (total score) in the clinical range when compared to
caregivers of TDC (2%), respectively. While this study defined the clin-
ical cut-off for parenting stress differently (> 85th percentile) than our
study (total stress raw score ≥ 90 (Abidin, 1995), both investigations
found an increased prevalence of clinically significant levels of parent-
ing stress among caregivers of children with ASD when compared to
caregivers of TDC. It is important to note that the tool that was used
LI ET AL .
in this study to assess caregiver stress (PSI) only assessed perceived
stress related to caregivers’ parenting role but it did not assess other
types of stress such as acute stress, episodic acute stress, or chronic
stress. It, therefore, is possible that caregivers’ levels of overall stress
may be even higher. Together, these findings suggest that caregivers of
children with ASD may benefit from behavioral interventions for stress
management with particular focus on their parenting role.
With respect to caregivers’ perceived functional health and well-
being, we found no significant differences between groups in any of
the 10 health domains, even when controlling for covariates. A study
by Garriot and colleagues (Garriot, Villes, Bartolini, & Poinso, 2014)
examined functional health and well-being in a sample of 124 par-
ents of children with ASD using the SF-36 assessment tool. The results
showed that between-group differences across the SF-36 subscales
depended on children's level of severity of ASD. Caregivers of chil-
dren with severe ASD scored significantly lower on the physical func-
tioning, role-physical, social functioning, role-emotional, mental health
subscales as well as the physical and mental component summary
scores compared to caregivers of typically developing children. Care-
givers of children with moderate ASD, on the other hand, only sig-
nificantly differed from caregivers of typically developing children in
the mental health subscale. The small sample size in our pilot study
prevented us from performing more refined analyses which take into
account children's ASD severity status, which may explain some of the
differences in the findings across the two studies. The findings from
our study could also suggest that caregivers of children with ASD may
develop strategies to effectively cope with increased levels of stress
and/or may use other resources (e.g., support network) which help
them cope. The concept of resilience has gained considerable atten-
tion in the field of nursing care and nursing science and reflects the
ability or capacity “to maintain a stable equilibrium” and “the ability of
adults […] to maintain relatively stable and healthy levels of psycho-
logical and physiological functioning” in times of aversive life circum-
stances (Bonanno, 2004). Resilient caregivers of children with chronic
conditions are believed to be those who are proactive toward main-
taining cooperative relationships with healthcare professionals, seek
out information and resources, and develop social support networks
(Lin, Rong, & Lee, 2013).
The strengths of this study include the concurrent assessment
of a series of caregiver-reported health outcomes (diet, functional
health and well-being, parenting stress) and the direct measurement
of caregiver height and weight. The study had several limitations.
First of all, we used the PSI to assess caregivers’ perceived stress
related to their parenting role. It, however, is possible that care-
givers of children with ASD experience other types of stress, such
as acute stress, episodic acute stress, or chronic stress, which our
study may not have captured. Second, the skewed distribution of sev-
eral caregiver demographic characteristics (i.e., caregiver race, mari-
tal status, education, and household income) may have attenuated the
between-group differences in health-related outcomes. Racial/ethnic
and socioeconomic disparities in obesity, diet quality, and caregiver
stress have been well documented (Bodnar et al., 2017; Wang & Bey-
doun, 2007; Williams, Mohammed, Leavell, & Collins, 2010). While we
controlled for between-group differences in demographic characteris-
7 of 9
tics by adding these covariates to the general linear regression models,
it is possible that this approach may not have fully corrected for the
influence of these demographic characteristics. Third, for most of our
outcome measures we relied on caregiver self-report. Future studies
can be strengthened by adding biological markers, such as salivary or
serum/plasma cortisol, as outcome measures. Last, it is possible that
this pilot study may have had limited statistical power, which in turn
may explain the lack of significant between-group differences in many
outcomes. Given that this study was a pilot study, we did not perform
an a priori power analysis. A post-hoc power analysis showed that
this study only had sufficient statistical power to detect a significant
between-group difference in caregiver parenting stress (total stress
score; Cohen's D effect size: 0.81). Cohen's D effect sizes for other out-
comes (i.e., BMI, HEI, SF-36 Physical Component Score, SF-36 Mental
Component Score) were small to moderate (0.04-0.24).
4.1 How might this information affect nursing
practice?
The findings of this analysis have important implications for nurses
and other care providers. First, the high levels of caregiver-reported
parenting stress warrant a thorough assessment of perceived stress
levels be completed by nurses at routine physical exams. Nurses
should use comprehensive screening tools to assess levels of overall
caregiver stress including acute stress, episodic acute stress, or
chronic stress in addition to parenting stress. If necessary, nurses
should provide caregivers with resources about mental healthcare
providers and programs for stress management. Second, given the
power of caregiver resilience in protecting psychological and physical
functioning, it will be important for nurses to effectively measure lev-
els of caregiver resilience in their patients by at the same time taking
into consideration the broader context (e.g., socioeconomic factors,
family structure) of caregivers’ life circumstances and to implement
resilience-based care interventions, if warranted.
In summary, the findings of this study showed that caregivers of chil-
dren with ASD experienced high levels of parenting stress but they did
not differ significantly from caregivers of TDC in weight status, dietary
quality, or perceived functional health and well-being. Interventions
for families who are caring for children with ASD should include stress
management strategies to help caregivers reduce stress associated
with their parenting role.
ACKNOWLEDGEMENT
The authors acknowledge the contributions of the staff and students at
the Center for Weight and Eating Disorders at the University of Penn-
sylvania and the Center for Autism Research at CHOP who assisted
with this project. The authors’ responsibilities were as follows – XSL:
statistical analysis, drafting of manuscript; JAPM: interpretation of
results, critical revision of manuscript; AT, JC: statistical analysis, inter-
pretation of results, critical revision of manuscript; TVEK: study design,
data collection, statistical analysis, interpretation of results, critical
revision of manuscript. The authors have no competing interests.
8 of 9 LI ET AL .

CONFLICT OF INTEREST STATEMENT Juruena, M. F. (2014). Early-life stress and HPA axis trigger recurrent adult-
hood depression. Epilepsy Behav, 38, 148–159.
The authors report no actual or potential conflicts of interest.
Kelly, S. J., & Ismail, M. (2015). Stress and type 2 diabetes: A review of how
FUNDING SOURCE stress contributes to the development of type 2 diabetes. Annu Rev Pub-
lic Health, 36, 441–462.
This research was funded by the Biobehavioral Research Center in the
Kivimaki, M., & Kawachi, I. (2015). Work Stress as a Risk Factor for Cardio-
School of Nursing at the University of Pennsylvania.
vascular Disease. Curr Cardiol Rep, 17(9), 630.
Konturek, P. C., Brzozowski, T., & Konturek, S. J. (2011). Stress and the gut:
ORCID Pathophysiology, clinical consequences, diagnostic approach and treat-
ment options. J Physiol Pharmacol, 62(6), 591–599.
Tanja V.E. Kral http://orcid.org/0000-0002-9324-0294
Kral, T. V., Souders, M. C., Tompkins, V. H., Remiker, A. M., Eriksen, W. T., &
Pinto-Martin, J. A. (2015). Child Eating Behaviors and Caregiver Feed-
ing Practices in Children with Autism Spectrum Disorders. Public Health
Nurs, 32(5), 488–497.
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