Disability and Health Journal xxx (2017) 1e6

Contents lists available at ScienceDirect

Disability and Health Journal

journal homepage: www.disabilityandhealthjnl.com

Differences in physical health, and health behaviors between family

caregivers of children with and without disabilities
Meenhye Lee, PhD, RN a, *, Chang Park, PhD a, Alicia K. Matthews, PhD a, Kelly Hsieh, PhD b
a
College of Nursing, University of Illinois at Chicago, 845 S. Damen Ave Chicago, IL 60612, USA
b
Department of Disability and Human Development, University of Illinois at Chicago, 1640 W Roosevelt Rd, Chicago, IL 60608, USA

a r t i c l e i n f o a b s t r a c t

Article history: Background: Providing care for children with disabilities can negatively influence the physical health and
Received 10 November 2016 health behaviors of family caregivers.
Received in revised form Objectives/hypothesis: The study purposes were to compare the prevalence of chronic conditions and
15 February 2017
health risk behaviors of family caregivers of children with and without disabilities and to examine as-
Accepted 9 March 2017
sociations between disability status of children and family caregivers' chronic conditions and health risk
behaviors.
Keywords:
Methods: This study compared chronic conditions and health risk behaviors across adult family care-
Children with disabilities
Family caregiver
givers of children with a disability (FCG-D) and family caregivers of children without a disability (FCG)
Physical health living in a U.S. household using 2015 National Health Interview Survey data. Health risk behaviors were
Health risk behaviors defined as heavy drinking, current smoking, physical inactivity, and unhealthy sleep. Multivariable lo-
gistic regression was conducted to compare chronic conditions and health risk behaviors between FCG-D
and FCG with adjustments for demographic and healthcare coverage covariates.
Results: FCG-D showed significantly greater likelihoods of chronic conditions (e.g., asthma, back pain,
chronic bronchitis, heart conditions, migraine, and obesity) than FCG. FCG-D also exhibited significantly
more smoking and unhealthy sleep.
Conclusions: Family caregivers of children with a disability reported significantly greater likelihoods of
various chronic conditions and were more likely to engage in health risk behaviors (smoking and un-
healthy sleep). Further study is needed to develop intervention programs for encouraging effective
health-promoting behaviors among family caregivers of children with a disability as well as health
policies for decreasing health disparities experienced by this population.
© 2017 Elsevier Inc. All rights reserved.

1. Introduction American caregivers have provided unpaid care to a child.4 The

In 2010, children with disabilities made up an estimated 7.94% of
the U.S. population, and the overall prevalence of disability among
children has increased 15.6% over the past decade.1 Approximately
25% of all American families include a child with a disability.2
Medical advances, shorter hospital stays, and expansion of home
care technology have imposed higher care responsibilities for
families, who are being asked to shoulder greater care burdens for
longer periods of time.3 Indeed, a National Alliance for Caregivers
executive report estimated that approximately 3.7 million
* Corresponding author.
E-mail addresses: mlee214@uic.edu (M. Lee), parkcg@uic.edu (C. Park), aliciak@
uic.edu (A.K. Matthews), hsieh@uic.edu (K. Hsieh).
health and well-being of children are inextricably linked to their
caregivers' physical, emotional, and social health; social circum-
stances; and child-rearing practices.5 As such, more research on the
health of caregivers of children with disabilities is warranted.
Research suggests that caring for children with disabilities can
be a stressful responsibility, often negatively impacting the health
of family caregivers.6 Studies consistently report higher levels of
psychological health problems including higher levels of perceived
stress,7 depression and lower levels of subjective well-being among
caregivers of children with disabilities.8 However, most of the
research performed to date on the health of parents of children
with disabilities has focused on psychological health with little
attention to physical health outcomes. Among the few studies of
family caregivers of children with disabilities, these caregivers have
been found to have poorer physical health outcomes than family

http://dx.doi.org/10.1016/j.dhjo.2017.03.007
1936-6574/© 2017 Elsevier Inc. All rights reserved.

Please cite this article in press as: Lee M, et al., Differences in physical health, and health behaviors between family caregivers of children with
and without disabilities, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.03.007
2 M. Lee et al. / Disability and Health Journal xxx (2017) 1e6
caregivers of typically developing children. For example, studies
showed that parents having children with disabilities reported a
greater variety and a greater overall number of chronic conditions9
and a higher number of physical health complaints7 compared to
parents of typically developing children.
The demands of parenting children with disabilities may not
only cause families' health problems but may also change their
health risk behaviors. Because family caregivers of children with
disabilities spend so much time in providing care, they may have
little time or energy to engage in healthy lifestyle,10 and thus their
own physical and/or mental health may be compromised. Although
large scale surveillance research is scare, evidence does support
that caregivers are vulnerable to high rates of health risk behaviors.
In one of the few studies examining this topic, mothers of children
with disabilities have been found to exhibit frequent sleep
disruption activity due to night-time care responsibilities and low
participation in leisure11 and planned exercise programs.10
Most children with disabilities are cared for at home by their
family caregivers, and the features of the family household affect
both the well-being of the families and the risks they face. Even
though household structure is highly variable across disability
households, differences in socioeconomic status have been noted
between families of children with and without disabilities. In
general, caregivers of children with disabilities have been found to
be more likely to be older, female, poorer, less employed, and
covered by Medicaid.9,12e14 As many studies have reported effects
of lower socioeconomic status on a wide array of health in-
dicators,15,16 socioeconomic and demographic factors should be
controlled for when comparing the impact of household disability
status on family caregivers' health outcomes.
While a few diagnosis-specific differences exist, caregivers of
children with any chronic condition experience similar impacts,
concerns, and needs for support.17,18 Thus, it is also necessary to
examine the impact of children's disability status on family care-
givers' health across a broad range of disabilities in children. A
growing body of research suggests that family caregivers of chil-
dren with disabilities have poorer health outcomes than caregivers
of typically developing children. However, no American studies of
family caregivers of children with disabilities have used a nationally
representative sample to examine an extensive array of higher-risk
chronic conditions or have examined the prevalence of a variety of
health risk behaviors. The specific aims of this study were to (1)
compare the prevalence of chronic conditions and health risk be-
haviors of family caregivers of children with and without disabil-
ities and (2) examine associations between disability status of
children and family caregivers' chronic conditions and health risk
behaviors while controlling for covariates.
2. Methods
2.1. Data source
Data for this study was 2015 National Health Interview Survey
(NHIS),19 which employed cross-sectional, multistage area proba-
bility design sampling of non-institutionalized civilian individuals
in the general U.S. population. NHIS is a household, questionnaire-
based, in-person interview survey conducted annually by the Na-
tional Center for Health Statistics of the Centers for Disease Control
and Prevention. Households are selected through a stratified, ran-
domized, probability-cluster design. Probability samples of the
adult population in all 50 states and the District of Columbia are
obtained. The survey data is maintained by the National Center for
Health Statistics and provides cross-sectional health information.
The final adult response rate for the 2015 NHIS was 55.2%.19,20
Please cite this article in press as: Lee M, et al., Differences in physical health, and health behaviors between family caregivers of children with
and without disabilities, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.03.007
2.2. Identification of children with a disability
Based on the person file of 2015 NHIS data, children with a
disability were defined as children experiencing any activity limi-
tations. A child was considered to have a disability if the survey
respondent reported that the child experienced any of the
following due to a chronic condition based on the criteria of Hou-
trow et al.(2014)1: limitations in the kinds or amounts of play ac-
tivities done by other children (<5 years); needing help with
personal care including bathing, dressing, eating, getting in and out
of bed and chairs, using the toilet, and getting around the home
(3 þ years); difficulty walking without equipment (<18 years);
difficulty remembering (<18 years); receipt of special education
services or early intervention services (<18 years); or any other
activity limitation (<18 years). The disability definitions used for
children here conform with the International Classification of
Functioning, Disability and Health Framework for understanding of
disability.21
2.3. Identification of caregivers living with children having
disabilities
The 2015 NHIS dataset contained no information identifying
primary caregivers of children with disabilities. Thus, for the 33,672
individuals included in the NHIS adult file, adult family caregivers
are defined as adults 18 years and older who were living in a
household with children with a disability and who identified
themselves as family members of the children (FCG-D, n ¼ 1436).
Family caregivers were defined as adult family members living with
children without disabilities (FCG, n ¼ 8599). Adults without chil-
dren were excluded from the study, as were adults who were not
living in the same household with related children.
2.4. Identification of physical health
To investigate the physical health outcomes of the FCG-D and
FCG groups in this study, chronic conditions were selected based on
a 2004 study by Brehaut et al.9 that examined differences between
family caregivers who had children with cerebral palsy and care-
givers for typically developing children. Self-reported conditions
were defined based on affirmative responses to the following
question: “Have you ever been told by a doctor or health profes-
sional that you have [disease or condition]?” The chronic conditions
included in this study were asthma, arthritis, back pain, cancer,
chronic bronchitis, a cold in the past two weeks, diabetes mellitus,
heart conditions (heart disease), high blood pressure (hyperten-
sion), joint symptoms, obesity, migraine/headaches, neck pain,
sinusitis, stomach problems, and stroke. In addition to these
chronic conditions, we included obesity, joint symptoms (including
joint pain, aching, and stiffness), and neck pain. Obesity was
defined as a body mass index (BMI) of 30 kg/m2 or higher.22
2.5. Identification of health risk behaviors
The health risk behaviors considered in this study were heavy
drinking, current smoking, physical inactivity, and unhealthy sleep.
Heavy drinking was defined as consuming 12 or more drinks in an
entire life and as consuming more than 14 drinks per week in the
past year for males and more than 7 drinks per week in the past
year for females.23 Current smoking was defined based on whether
respondents were or were not currently smoking. Physical inac-
tivity was defined based on the 2008 Physical Activity Guidelines
for Americans; this guideline recommended that adults perform at
least 150 min per week of moderate-intensity or 75 min per week
of vigorous-intensity aerobic physical activity or an equivalent
 M. Lee et al. / Disability and Health Journal xxx (2017) 1e6 3

combination of moderate- and vigorous-intensity activity along Table 1

with muscle-strengthening activities on 2 or more days per week.24 Demographic characteristics of study sample: 2015 National Health Interview Sur-
vey (N ¼ 10,035).
Based on the guideline recommendation for aerobic activity, we
classified each respondent into (1) a sufficiently or highly active FCG-D (%) FCG (%) P value
group, if they met the physical activity recommendation, or (2) an (n ¼ 1436) (n ¼ 8599)
inactive group according to his/her responses to questions about
Age (years) 39.4 (SE: 0.44) 38.3 (SE: 0.18) 0.02
involvement in physical activities. Regarding unhealthy sleep, re- Gender
spondents who reported 7e8 h of sleep in a 24-h period were Male 42.0 45.1 0.11
considered to be healthy sleepers, whereas those who reported Female 58.0 54.9
Race
sleeping less than 7 h or more than 8 h in a 24-h period were
White 80.4 76.4 <0.001
considered as experiencing unhealthy sleep; these categories were Black 14.9 13.7
based on recommended sleep hours in previous literature.25,26 Asian 3.0 8.1
Other 1.7 1.8
2.6. Statistical analysis Marital status
Married with spouse 59.0 64.8 <0.05
27 Other 41.0 35.2
Data analyses were conducted using Stata 13. Our analyses Poverty Status (Percentage of FPL)
accounted for the complex survey design of the NHIS. We merged <100 20.1 14.9 <0.001
four linked 2015 NHIS datasetsdhousehold, person, family, and 100 & <200 28.6 21.4
200 & <300 18.6 22.3
adultdto obtain the study sample. Because the NHIS dataset
300 32.7 41.4
included data from different samples obtained using a multistage Work status
area probability sampling design, all analyses performed in this Not working 35.6 26.5 <0.001
study were based on weighted statistics using weights derived Currently working 64.4 73.5
from the adult sample weight units provided with the NHIS dataset. Healthcare coverage
Private 57.4 66.5 <0.001
Descriptive statistics were conducted using means, Chi-square
Medicare or Medicaid 26.0 16.6
tests, and linear regression based on weighted prevalence and Other coverage 4.1 2.9
compared whether the prevalence of demographic characteristics Other 12.6 14.0
differed between the FCG-D and FCG groups. Note: FCG-D ¼ family caregivers of children with disabilities.
A series of multivariable logistic regression was conducted to FCG ¼ family caregivers of children without disabilities.
compare the physical health, health risk behaviors, and preventive SE: Standard error.
healthcare of caregivers living with children with and without a Poverty Status: Ratio of family income to poverty based on Federal Poverty Level
(FPL).
disability in the U.S. We adjusted for age, gender, race, poverty
status, marital status, work status, and healthcare coverage. The
2015 NHIS data included 33,672 subjects in the adult sample. Our Table 2
analysis included 10,035 adult family members aged 18 years or Unadjusted prevalence of chronic conditions and health risk behaviors between
older based on the criteria of family caregivers noted above. Of family caregivers of children with and without disabilities using 2015 National
Health Interview Survey (N ¼ 10,035).
these family members, two populations were compared: caregivers
of children with a disability (FCG-D, n ¼ 1436) and caregivers of FCG-D (n ¼ 1436) FCG (n ¼ 8599) P value
children without a disability (FCG, n ¼ 8599). % (95% CI) % (95% CI)

Chronic condition
3. Results Asthma 16.9 (14.4e19.8) 11.2 (10.3e12.1) <0.001
Arthritis 19.8 (17.3e22.5) 11.6 (10.8e12.5) <0.001
3.1. Demographic variables Back pain 35.2 (32.0e38.5) 26.7 (25.5e27.9) <0.001
Cancer 4.2 (3.1e5.7) 3.2 (2.7e3.7) 0.09
Chronic bronchitis 5.7 (4.3e7.6) 2.4 (2.0e3.0) <0.001
Table 1 describes the weighted demographic characteristics of
Cold in past two weeks 14.0 (11.7e16.7) 10.4 (9.6e11.2) <0.01
the FCG-D and FCG groups. Diabetes 7.7 (5.9e10.0) 5.0 (4.6e5.7) <0.01
Results showed that FCG-D were slightly older (M ¼ 39.4 years, Heart conditions 7.3 (5.5e9.6) 4.1 (3.6e4.7) <0.001
SE: 0.44), compared to FCG (M ¼ 38.3 years, SE: 0.18). More than Hypertension 24.7 (21.8e27.8) 19.1 (18.1e20.2) <0.001
50% were females for both groups. Most members of each group Joint symptoms 35.7 (32.1e39.5) 24.3 (23.1e25.6) <0.001
Migraine/headaches 24.1 (21.2e27.2) 16.6 (15.6e17.6) <0.001
were White, and the number of Asians in the FCG-D group was Neck pain 20.0 (17.3e23.0) 14.5 (13.5e15.5) <0.001
especially small compared to the FCG group (3.01% vs. 8.11%). Obesity 41.0 (37.7e44.3) 31.4 (30.1e32.7) <0.001
Compared to FCG group, fewer FC G-D group was married (58.99% Sinusitis 14.3 (12.2e16.8) 10.1 (9.3e11.0) <0.001
vs. 64.83%), and showed greater poverty (48.7% vs. 36.29%) based Stomach problems 5.2 (3.9e6.9) 3.9 (3.4e4.5) 0.07
Stroke 2.1 (1.4e3.4) 1.1 (0.08e1.4) <0.01
on the federal poverty level (defined as below 200%). FCG-D group
Health risk behaviors
were working less (64.43% vs. 73.51%) and more likely to have Heavy drinking 4.8 (3.4e6.7) 3.8 (3.2e4.3) 0.22
Medicare or Medicaid coverage (25.99% vs. 16.62%). Physical inactivity 53.6 (50.0e57.2) 48.8 (47.2e50.4) <0.05
Smoking 22.2 (19.3e25.4) 14.0 (13.1e14.9) <0.001
3.2. Prevalence of chronic conditions and health risk behaviors Unhealthy sleep 47.7 (44.2e51.1) 41.1 (39.4e42.5) <0.001

Note: FCG-D ¼ family caregivers of children with disabilities.

Table 2 shows the unadjusted, weighted prevalence of chronic
conditions, and health risk behaviors. For the chronic conditions,
compared to the FCG group, the FCG-D group had a higher preva-
lence of 13 out of 16 chronic conditions including asthma (16.9% vs.
11.2%), arthritis (19.8% vs. 11.6%), back pain (35.2% vs. 26.7%),
chronic bronchitis (5.7% vs. 2.4%), cold in the past two weeks (14%
vs. 10.4%), diabetes (7.7% vs. 5.0%), heart conditions (7.3% vs. 4.1%),
FCG ¼ family caregivers of children without disabilities.
Reference group: FCG.
p*<0.05, p** <0.01, p***<0.001.
hypertension (24.7% vs. 19.1%), joint symptoms (35.7% vs. 24.3%),
migraine/headaches (24.1% vs. 16.6%), neck pain (20.0% vs. 14.5%),
obesity (41% vs. 31.4%), and sinusitis (14.3% vs. 10.1%). The top five

Please cite this article in press as: Lee M, et al., Differences in physical health, and health behaviors between family caregivers of children with
and without disabilities, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.03.007
4 M. Lee et al. / Disability and Health Journal xxx (2017) 1e6

chronic conditions for the FCG-D are obesity, joint symptoms, back 4. Discussion
pain, hypertension, and migraine/headaches. A similar pattern of
top five chronic conditions (obesity, back pain, joint symptoms, This study examined the differences in physical health outcomes
hypertension, and migraine/headaches) was noted in the FCG and health risk behaviors among caregivers living with children
group. with and without disabilities. In the present study, the FCG-D
For the health risk behaviors, the FCG-D group had a higher sample was similar to the FCG sample in terms of gender distri-
prevalence of smoking (22.2% vs. 14%), physical inactivity (53.6% vs. bution. Similar to caregivers of children with disabilities in other
48.8%), and unhealthy sleep (47.7% vs. 41.1%) than the FCG group. studies,14,28 the FCG-D sample in this study was more likely to be
older, unmarried, unemployed, and poor.
Our study demonstrates that the FCG-D group fared worse than
the FCG group with respect to physical health. Of the 16 chronic
3.3. Comparison of chronic conditions and health risk behaviors
conditions considered in the study, the prevalence of 13 conditions
was significantly greater among the caregivers of children with
Table 3 presents results of multivariable logistic regressions in
disabilities. These findings are consistent with the study (Brehaut
chronic conditions and health-risk behaviors when controlling for
et al., 2004) in which family caregivers of children with disabilities
all covariates. As shown in Table 3, FCG-D showed significantly
reported having more chronic conditions such as asthma, arthritis,
greater likelihoods of having various chronic conditions. Cancer,
back problems, high blood pressure, migraine headaches, sinusitis,
diabetes, and stomach problems were not significantly different
and heart disease.9 Many other studies also noted that family
between the two groups. However, FCG-D showed greater likeli-
caregivers were more likely to have self-reported poor physical
hoods of having asthma (odds ratio, OR ¼ 1.51, p < 0.001), arthritis
health,8 history of high blood pressure, diabetes, higher cholesterol
(OR ¼ 1.71, p<.001), back pain (OR ¼ 1.33, p < 0.001), chronic
levels,29 and a greater number of medications.30
bronchitis (OR ¼ 1.86, p ¼ 0.001), a cold in the past two weeks
One possible explanation for our FCG-D group having greater
(OR ¼ 1.37, p ¼ 0.006), diabetes (OR ¼ 1.37, p ¼ 0.09), heart con-
numbers of many chronic conditions is that the group's higher
ditions (OR ¼ 1.68, p ¼ 0.001), hypertension (OR ¼ 1.28, p¼0.013),
mean age may have inflated our results for their chronic conditions.
joint symptoms (OR ¼ 1.58, p < 0.001), migraine/headaches
That is, a direct effect of older age may have contributed to the
(OR ¼ 1.46, p < 0.001), neck pain (OR ¼ 1.32, p ¼ 0.006), obesity
higher prevalence of such conditions as hypertension and joint
(OR ¼ 1.42, p < 0.001), and sinusitis (OR ¼ 1.45, p ¼ 0.001).
symptoms in our study. Another possible contributor to the greater
Table 3 also shows results of multivariable logistic regressions in
prevalence of chronic conditions among FCG-D might be associated
health risk behaviors when controlling for all covariates. Among the
with socioeconomic status. Given the effects of lower socioeco-
health risk behaviors, the FCG-D group exhibited significantly
nomic status and psychological stressors on poor psychological and
greater smoking (OR ¼ 1.55, p < 0.001), and unhealthy sleep
physical health outcomes,31 it may be our FCG-D group reported
(OR ¼ 1.43, p ¼ 0.02) than the FCG group. Heavy drinking and
more chronic conditions in part because of their lower socioeco-
physical inactivity were not significantly different between the
nomic category, rather than because they are caregivers of children
groups.
with disabilities. Single caregiver (largely female parent)14 and
fewer reported working status households for children with dis-
Table 3 abilities9 have known to be linked to the greater exposure of
Comparison of chronic conditions and health-promoting behaviors between family poverty among disability families.
caregivers of children with and without disabilities, controlling for covariates using However, the high rates of chronic conditions among caregivers
2015 National Health Interview Survey (N ¼ 10,035).
of family members with disabilities are related to more than just
Odds ratio 95% CI P value their age or socioeconomic status.14 After we controlled for several
Lower Upper socioeconomic and demographic factors, most chronic conditions
still remained significantly higher among FCG-D. Previous studies
Chronic conditions
Asthma 1.51*** 1.21 1.88 <0.001 have reported that caregiving is related to increased chronic con-
Arthritis 1.71*** 1.40 2.09 <0.001 ditions. For instance, one prospective cohort study found that high
Back Pain 1.33** 1.13 1.57 <0.001 levels of care provision to children or grandchildren may have
Cancer 1.13 0.77 1.65 0.52 increased the risk of coronary heart disease among female care-
Chronic bronchitis 1.86** 1.28 2.72 0.001
Cold in past two weeks 1.37** 1.10 1.72 0.006
givers.29 Another prospective population based cohort study sug-
Diabetes 1.37 0.95 1.97 0.09 gested providing care and experiencing caregiver strain had
Heart conditions 1.68** 1.22 2.32 0.001 mortality risks that were 63% higher than non-caregiver control
Hypertension 1.28* 1.05 1.56 0.013 groups.32 However, as our study employed a cross-sectional design,
Joint symptoms 1.58*** 1.32 1.90 <0.001
we cannot conclude that caregiving influenced the higher preva-
Migraine/headaches 1.46*** 1.22 1.75 <0.001
Neck pain 1.32** 1.08 1.62 0.006 lence of chronic conditions observed in the FCG-D group in our
Obesity 1.42*** 1.23 1.64 <0.001 study. Future studies with a longitudinal design are needed to
Sinusitis 1.45** 1.17 1.81 0.001 investigate caregiving's effect on health outcomes including
Stomach problems 1.21 0.86 1.71 0.27 chronic conditions among caregivers of children with disabilities.
Stroke 1.75 0.98 3.15 0.06
Health risk behaviors
This study demonstrates high rates of health risk behaviors
Heavy Drinking 1.43 0.85 2.40 0.18 among caregivers of children with disabilities. Among these care-
Physical Inactivity 1.10 0.93 1.30 0.28 givers, 22.2% were current smokers, a much higher smoking prev-
Smoking 1.53*** 1.26 1.86 <0.001 alence than the 14% of caregivers of children without disabilities in
Unhealthy Sleep 1.21* 1.03 1.43 0.02
this study and the 16.8% smoking prevalence in U.S. adults aged 18
Note: FCG-D ¼ family caregivers of children with disabilities. years or older.33 One likely explanation for our finding is stress
FCG ¼ family caregivers of children without disabilities. related to caregiving. Caregivers of children with disabilities face
Covariates controlled: Age, gender, race, poverty status, marital status, work status
and healthcare coverage.
more challenges and experience more stress and strain compared
Reference group: FCG. with those of children without disabilities.34,35 Various unhealthy
p*<0.05, p** <0.01, p***<0.001. behaviors (smoking, drinking, drug use, and so on) are often the

Please cite this article in press as: Lee M, et al., Differences in physical health, and health behaviors between family caregivers of children with
and without disabilities, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.03.007
 M. Lee et al. / Disability and Health Journal xxx (2017) 1e6
preferred options for addressing stress because the materials are
easily accessible and the behaviors may alleviate the symptoms of
stress.36 Previous researchers have also found that family care-
givers who reported high levels of caregiving stress were more
likely to report health risk behaviors, including a high smoking
rate.30,37
Our results also showed that caregivers of children with dis-
abilities were more likely to report unhealthy sleep. Specifically, the
FCG-D group was 1.43 times more likely to report unhealthy sleep
duration (<7 or >8 h). This finding is consistent with evidence
suggesting that caregivers of children with disabilities experience
sleep disturbance.10,29 One plausible reason is that sleep problems
among children with disabilities are correlated with sleep habits of
caregivers.11,38e39 When children have a sleep disorder or require
nocturnal caregiving (e.g., children with a medical complexity
living at home), family caregivers are obligated to provide night-
time care. Sleep problems among caregivers of children with dis-
abilities have been reported to be associated with depression,
anxiety, stress intensity,40 and fatigue41 as well as less participation
in health-promoting activities and poor self-reported health.11
The effect of stressful caregiving demands on caregivers com-
bined with the effects of unhealthy behaviors may create large
physical health disparities that are unfavorable to caregivers of
children with disabilities. Although the mechanisms of caregiver
health decline are complex, research suggests that caregiver health
behavior patterns may be primary mechanisms by which care-
giving stressors affect health.42,43 More importantly, children with
disabilities with life-span conditions require substantial support
and greater dependence on caregivers.14 The longer caregivers have
been involved in caregiving, the more likely they are to report
health problems.44,45 Compared to older caregivers caring for
elderly family members, the health risks of caregivers of children
with disabilities may be underestimated because they are relatively
young and are able to employ a variety of strategies that, when
combined with the physical health of youth, effectively mask the
progression to the negative health effects that appear during and
after middle age.36 It is necessary to assess caregivers' health and
health risk behaviors before middle age, as the impacts of those
behaviors might be beginning to appear. Therefore, it is vital to
intervene as early as possible in order to reduce preventable health
problems and to encourage health-promoting behaviors. Such be-
haviors may postpone development of the problems for which this
population is at risk, allowing caregivers to remain healthy and
extend their caregiving activities for longer periods of time.46
Prevention of illness and intervention to reduce health risk be-
haviors for these caregivers will contribute to savings in healthcare
costs as well. Also, good health and an associated higher level of
energy in caregivers of children with disabilities may increase the
likelihood of positive caregiving even in the face of adverse
circumstances.47
4.1. Strengths and limitations
Several limitations of our study should be acknowledged. First,
we assumed that adult family members living with children with a
disability were caregivers because NHIS does not have a variable
identifying primary caregivers for children with a disability.
Therefore, we used adult family members living in the same
household with children with a disability as a proxy indicator to
assess caregiver health outcomes. However, the vast majority of
persons with disabilities, including children with disabilities, live in
a family setting where family members represent a significant
share of caregiving activities,37,45 so it is reasonable to consider
adult family members living in the same household with children
having disabilities as caregivers.
Please cite this article in press as: Lee M, et al., Differences in physical health, and health behaviors between family caregivers of children with
and without disabilities, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.03.007
5
Similarly, our analysis was limited by the fact that it employed
data that was not collected to test our specific hypotheses. Conse-
quently, specific variables indicating effects of caregiving such as
caregiving burden or caregiving intensity like caregiving time per
day and severity of disability were not available. Examination of
other variables, such as health-related quality of life and psycho-
logical variables related to caregiving, is necessary to more
comprehensively identify the effects of caregiving on caregivers'
health and well-being. Furthermore, because the NHIS relied on
self-reported chronic condition data and lack of objective mea-
surements such as BMI, the study may have been susceptible to
reporting bias.
As noted above, use of a cross-sectional design does not allow us
to establish a causal relationship between caregiving effects and
health consequences. Prospective longitudinal research is needed
to investigate caregiving's effect on chronic conditions and health
risk behaviors as well as to better understand the patterns of health
disparities affecting caregivers of children with different types and
degrees of disability.
Despite these study limitations, the findings offer strong evi-
dence of health disparities between caregivers of children with and
without disabilities. Previous studies have focused on specific
health outcomes or health behaviors of caregivers of children with
disabilities, and most of them have employed clinic-based data
with a small sample size. In contrast, the present study used a
large-scale, population-based sample which represents the broad
health outcome characteristics of caregivers of children with dis-
abilities in the U.S.
Our study findings provide evidence that can be used to develop
intervention programs for intervening health-risk behaviors such
as smoking cessation programs, and stress management programs
to improve quality of sleep among family caregivers having chil-
dren with a disability as well as health policies for decreasing
health disparities experienced by this population. Additionally, our
study design afforded a unique insight into the health of caregivers
and revealed that this group is an unrecognized vulnerable popu-
lation in terms of health disparities. Therefore, this study can serve
as a starting point for raising awareness of health disparities among
caregivers of children with disabilities, who presently constitute an
underserved sector of American society.
5. Conclusion
This study is important in that it draws attention to health
concerns among caregivers of children with disabilities. Providing
care for children with a disability has been associated with negative
physical health outcomes such as a greater likelihood of having
various chronic conditions. Caregivers were more likely to engage
in health risk behaviors, including smoking and unhealthy sleep.
Based on the socioeconomic inequalities observed between care-
givers of children with and without disabilities, greater social
support and policies to advocate for at-risk caregivers are required
to promote health among family caregivers of children with a
disability.
Given the high rates of health risks among caregivers of children
with disabilities found in this study and the known association
between health risks, health outcomes, and quality of life, greater
social and healthcare provider effort should be directed toward
promoting the health of these caregivers. Also, future studies
should investigate the longitudinal effects of caregiving on health
outcomes and health risk behaviors.
Acknowledgements
None.
6 M. Lee et al. / Disability and Health Journal xxx (2017) 1e6

References and Human Services. Physical Activity Guidelines for Americans. 2008.
25. Krueger PM, Friedman EM. Sleep duration in the United States: a cross-
sectional population-based study. Am J Epidemiol. 2009;169(9):1052e1063.
1. Houtrow AJ, Larson K, Olson LM, Newacheck PW, Halfon N. Changing trends of
http://dx.doi.org/10.1093/aje/kwp023.
childhood disability, 2001e2011. Pediatrics. 2014;134(3):530e538. http://
26. Buxton OM, Marcelli E. Short and long sleep are positively associated with
dx.doi.org/10.1542/peds.2014-0594.
obesity, diabetes, hypertension, and cardiovascular disease among adults in the
2. Wang Q. Disability and American Families: 2000. Census 2000 Special Reports.
United States. Soc Sci Med. 2010;71(5):1027e1036. http://dx.doi.org/10.1016/
2005; 62(4), 21e30. Washington, DC: U.S. Department of Commerce, Eco-
j.socscimed.2010.05.041.
nomics and Statistics Administration, U.S. Census Bureau; 2005. Retrieved
27. StataCorp LP. Stata Data Analysis and Statistical Software. 2007. Special Edition
January 10, 2017, from http://www.census.gov.proxy.cc.uic.edu/prod/
Release 10.
2005pubs/censr-23.pdf.
28. Cadman D, Rosenbaum P, Boyle M, Offord DR. Children with chronic illness:
3. Levine C. Always on Call: When Illness Turns Families into Caregivers. Vanderbilt
family and parent demographic characteristics and psychosocial adjustment.
University Press; 2000.
Pediatrics. 1991;87(6):884e889.
4. National Alliance for Caregiving. American Association of Retired Persons. Care-
29. Lee S, Colditz GA, Berkman LF, Kawachi I. Caregiving and risk of coronary heart
giving in the U.S.: Executive Summary. Bethesda, MD: AARP; 2015.
disease in U.S. women: a prospective study. Am J Prev Med. 2003;24(2):
5. Schor E. Family pediatrics report of the task force on the family. Pediatrics.
113e119.
2003;111(6):1541e1571.
30. Schulz R, Newsom J, Mittelmark M, Burton L, Hirsch C, Jackson S. Health effects
6. Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of care-
of caregiving: the caregiver health effects study: an ancillary study of the
givers of children with cerebral palsy. Pediatrics. 2005;115(6):e626e636.
cardiovascular health study. Ann Behav Med. 19(2):110e116. http://dx.doi.org/
http://dx.doi.org/10.1542/peds.2004-1689.
10.1007/BF02883327.
7. Lovell B, Moss M, Wetherell M. The psychosocial, endocrine and immune
31. McEwen BS. Protective and damaging effects of stress mediators. N Engl J Med.
consequences of caring for a child with autism or ADHD. Psychoneur-
1998;338(3):171e179. http://dx.doi.org/10.1056/NEJM199801153380307.
oendocrinology. 2012;37(4):534e542. http://dx.doi.org/10.1016/
32. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver
j.psyneuen.2011.08.003.
€rensen S. Differences between caregivers and noncaregivers in health effects study. JAMA. 1999;282(23):2215e2219.
8. Pinquart M, So
33. Centers for Disease Control and Prevention (CDC). Current cigarette smoking
psychological health and physical health: a meta-analysis. Psychol Aging.
among AdultsdUnited States, 2005e2014. Morb Mortal Wkly Rep.
2003;18(2):250e267. http://dx.doi.org/10.1037/0882-7974.18.2.250.
2015;64(44):1233e1240.
9. Brehaut JC, Kohen DE, Raina P, et al. The health of primary caregivers of chil-
34. Dabrowska A, Pisula E. Parenting stress and coping styles in mothers and fa-
dren with cerebral palsy: how does it compare with that of other Canadian
thers of pre-school children with autism and Down syndrome. J Intellect Disabil
caregivers? Pediatrics. 2004;114(2):e182e191.
Res JIDR. 2010;54(3):266e280. http://dx.doi.org/10.1111/j.1365-
10. Kuster PA, Badr LK, Chang BL, Wuerker AK, Benjamin AE. Factors influencing
2788.2010.01258.x.
health promoting activities of mothers caring for ventilator-assisted children.
35. Shilling V, Edwards V, Rogers M, Morris C. The experience of disabled children
J Pediatr Nurs. 2004;19(4):276e287. http://dx.doi.org/10.1016/
as inpatients: a structured review and synthesis of qualitative studies reporting
j.pedn.2004.05.009.
the views of children, parents and professionals. Child Care Health Dev.
11. Bourke-Taylor H, Pallant JF, Law M, Howie L. Relationships between sleep
2012;38(6):778e788. http://dx.doi.org/10.1111/j.1365-2214.2012.01372.x.
disruptions, health and care responsibilities among mothers of school-aged
36. Jackson JS, Knight KM, Rafferty JA. Race and unhealthy behaviors: chronic
children with disabilities. J Paediatr Child Health. 2013;49(9):775e782. http://
stress, the HPA Axis, and physical and mental health disparities over the life
dx.doi.org/10.1111/jpc.12254.
course. Am J Public Health. 2010;100(5):933e939. http://dx.doi.org/10.2105/
12. Heck KE, Makuc DM. Parental employment and health insurance coverage
AJPH.2008.143446.
among school-aged children with special health care needs. Am J Public Health.
37. Sisk RJ. Caregiver burden and health promotion. Int J Nurs Stud. 2000;37(1):
2000;90(12):1856e1860.
37e43. http://dx.doi.org/10.1016/S0020-7489(99)00053-X.
13. Kuhlthau KA, Perrin JM. Child health status and parental employment. Arch
38. Keilty K, Cohen E, Ho M, Spalding K, Stremler R. Sleep disturbance in family
Pediatr Adolesc Med. 2001;155(12):1346e1350. http://dx.doi.org/10.1001/
caregivers of children who depend on medical technology: a systematic re-
archpedi.155.12.1346.
view. J Pediatr Rehabil Med. 2015;8(2):113e130. http://dx.doi.org/10.3233/
14. Fujiura GT. The political arithmetic of disability and the american family: a
PRM-150325.
demographic perspective. Fam Relat. 2014;63(1):7e19. http://dx.doi.org/
39. Wayte S, McCaughey E, Holley S, Annaz D, Hill CM. Sleep problems in children
10.1111/fare.12051.
with cerebral palsy and their relationship with maternal sleep and depression.
15. Mobarak R. Predictors of stress in mothers of children with cerebral palsy in
Acta Paediatr Oslo Nor. 2012;101(6):618e623. http://dx.doi.org/10.1111/
Bangladesh. J Pediatr Psychol. 2000;25(6):427e433. http://dx.doi.org/10.1093/
j.1651-2227.2012.02603.x, 1992.
jpepsy/25.6.427.
40. Chu J, Richdale AL. Sleep quality and psychological wellbeing in mothers of
16. King G, King S, Rosenbaum P, Goffin R. Family-centered caregiving and well-
children with developmental disabilities. Res Dev Disabil. 2009;30(6):
being of parents of children with disabilities: linking process with outcome.
1512e1522. http://dx.doi.org/10.1016/j.ridd.2009.07.007.
J Pediatr Psychol. 1999;24(1):41e53.
41. Giallo R, Wood CE, Jellett R, Porter R. Fatigue, wellbeing and parental self-
17. Neely-Barnes SL, Dia DA. Families of children with disabilities: a review of
efficacy in mothers of children with an autism spectrum disorder. Autism Int
literature and recommendations for interventions. J Early Intensive Behav
J Res Pract. 2013;17(4):465e480. http://dx.doi.org/10.1177/
Interv. 2008;5(3):93e107. http://dx.doi.org/10.1037/h0100425.
1362361311416830.
18. Stein REK, Jessop DJ. What diagnosis does not tell: the case for a noncategorical
42. Vitaliano PP, Zhang J, Scanlan JM. Is caregiving hazardous to One's physical
approach to chronic illness in childhood. Soc Sci Med. 1989;29(6):769e778.
Health? A meta-analysis. Psychol Bull. 2003;129(6):946e972. http://dx.doi.org/
http://dx.doi.org/10.1016/0277-9536(89)90157-3.
10.1037/0033-2909.129.6.946.
19. Centers for Disease and Prevention (CDC). National Health Interview Survey,
43. Rabinowitz YG, Mausbach BT, Thompson LW, Gallagher-Thompson D. The
Accessed August 20, 2016. http://www.cdc.gov/nchs/nhis/nhis_questionnaires.
relationship between self- efficacy and cumulative health risk associated with
htm.
health behavior patterns in female caregivers of elderly relatives with Alz-
20. National Center for Health Statistics. Survey Description, National Health Inter-
heimer's dementia. J Aging Health. 2007;19(6):946e964. http://dx.doi.org/
view Survey. Hyattsville, Maryland: National Center of Health Statistics; 2015,
10.1177/0898264307308559.
2016.
44. Snyder B, Keefe K. The unmet needs of family caregivers for frail and disabled
21. Simeonsson RJ, Leonardi M, Lollar D, Bjorck-Akesson E, Hollenweger J,
adults. Soc Work Health Care. 1985;10(3):1e14. http://dx.doi.org/10.1300/
Martinuzzi A. Applying the international classification of functioning, disability
J010v10n03_01.
and health (ICF) to measure childhood disability. Disabil Rehabil. 2003;25(11-
45. Wolff JL, Kasper JD. Informal caregiver characteristics and subsequent hospi-
12):602e610.
talization outcomes among recipients of care. Aging Clin Exp Res. 2004;16(4):
22. Bhaskaran K, Douglas I, Forbes H, dos-Santos-Silva I, Leon DA, Smeeth L. Body-
307e313.
mass index and risk of 22 specific cancers: a population-based cohort study of
46. McDonald PE, Brennan PF, Wykle ML. Perceived health status and health-
5$24 million UK adults. Lancet. 2014;384(9945):755e765. http://dx.doi.org/
promoting behaviors of African-American and White informal caregivers of
10.1016/S0140-6736(14)60892-8.
impaired elders. J Natl Black Nurses Assoc JNBNA. 2005;16(1):8e17.
23. Mukamal KJ, Chen CM, Rao SR, Breslow RA. Alcohol consumption and cardio-
47. Ellingsen R, Baker BL, Blacher J, Crnic K. Resilient parenting of preschool chil-
vascular mortality among U.S. Adults, 1987 to 2002. J Am Coll Cardiol.
dren at developmental risk. J Intellect Disabil Res JIDR. 2014;58(7):664e678.
2010;55(13):1328e1335. http://dx.doi.org/10.1016/j.jacc.2009.10.056.
http://dx.doi.org/10.1111/jir.12063.
24. US Department of Health and Human Services, and US Department of Health

Please cite this article in press as: Lee M, et al., Differences in physical health, and health behaviors between family caregivers of children with
and without disabilities, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.03.007