AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES EAAIDD

2015, Vol. 120, No. 2, 145165 DOI: 10.1352/1944-7558-120.2.145

Cultural and Child-Related Predictors of Distress Among

Latina Caregivers of Children With Intellectual Disabilities
Kristin A. Long, Barbara Kao, Wendy Plante, Ronald Seifer, and Debra Lobato

Abstract
The objective of this article is to examine associations among socioeconomic, cultural, and
child factors and maternal distress among families of children with intellectual disabilities
(ID). Latino and nonLatino White (NLW) mothers of children with and without ID (N 5
192) reported on familism, language acculturation, maternal distress, child adaptive
functioning, and child behavior problems. Among mothers of children with ID, higher
levels of child behavior problems mediated the association between Latina ethnicity and
elevated maternal distress. Associations between child behavior problems and maternal
distress in Latina mothers of children with ID were moderated by single-parent marital
status, higher familism, and lower English usage. Thus, child and cultural factors contribute
to elevated distress among Latina mothers of children with ID.
Key Words: parent; caregiver; intellectual disability; Latino; Hispanic; culture; familism; acculturation

Introduction functioning of the child with ID. For example,

Childhood intellectual disability (ID) has the
potential to alter families emotional climate and
patterns of functioning. Parents of children with
disabilities report poorer mental health than
parents of typically developing children (Bourke
et al., 2008; Gray et al., 2011). This includes
increased rates of psychopathology (Gau, Chiu,
Soong, & Lee, 2008); elevated depressive symp-
tomatology (Bailey, Golden, Roberts, & Ford,
2007); and more somatic symptoms such as
headaches, backaches, muscle soreness, fatigue,
and hot flashes (Smith, Seltzer, & Greenberg,
2012). The majority of research assessing parental
distress has focused on mothers, who are often the
primary caregivers for the child with ID. Relative
to fathers of children with ID, mothers of children
with ID have lower general well-being (Olsson &
Hwang, 2006, 2008), higher rates of parenting
stress (Gerstein, Crnic, Blacher, & Baker, 2009;
Herring et al., 2006), and elevated depressive
symptoms (Olsson & Hwang, 2001).
Maternal mental health is important in its
own right and for its association with the
higher mother-child interaction quality (e.g.,
maternal technical scaffolding and dyadic plea-
sure) decreases the likelihood that children with
early developmental risk will meet criteria for ID
later (Fenning & Baker, 2012). Parental negative
affect and higher parenting stress predict subse-
quent poorer social skills among children with ID
(Green & Baker, 2011; Neece & Baker, 2008). In
children with Down syndrome, lower maternal
sensitivity toward the child is cross-sectionally
related to increased aggression in home and
school settings (Niccols, Milligan, Chisholm, &
Atkinson, 2011).
Despite mean differences in maternal distress
between samples of mothers with and without a
child with ID, there is individual variability in
maternal mental health. Therefore, the present
research focuses on the identification of contex-
tual risk and protective factors that may increase
or decrease mothers chances of experiencing
elevated distress in the context of having a child
with ID. Specifically, we examine associations of
maternal distress with cultural (e.g., familism and
English language use), child- or disability-related

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2015, Vol. 120, No. 2, 145165
(e.g., maladaptive behaviors and ID severity), and
demographic factors (e.g., per capita income and
household composition).
Contextual Risk and Protective Factors
Psychosocial risk among mothers of children with
ID is associated with numerous contextual factors.
For example, lower levels of perceived social
support and quality of marital and co-parenting
relationships are associated with poorer concur-
rent and prospective parent well-being (Hauser-
Cram et al., 2001; Norlin & Broberg, 2013) and
lower family quality of life (Cohen, Holloway,
Domnguez-Pareto, & Kuppermann, 2014). Other
risk factors for lower maternal well-being include
an external locus of control (Hassall, Rose, &
McDonald, 2005; Lloyd & Hastings, 2009),
decreased psychological acceptance of life circum-
stances and increased use of avoidant coping
strategies (Lloyd & Hastings, 2008), as well as
poorer self-rated health (Olsson & Hwang, 2008).
With regard to demographic risk factors,
distress may be higher in mothers of older (ages
12+ years) than younger children with ID (Gray et
al., 2011). Unmarried mothers of children with
ID have a higher risk for depression (Olsson
& Hwang, 2001), while higher education and
income are protective for maternal well-being,
quality of life, and depressive symptoms (Olsson
& Hwang, 2008; Tekinarslan, 2013; Yildirim &
Basbakkal, 2010). When considered together, the
protective roles of employment and marriage on
maternal mental health have been shown to be
mediated by socioeconomic status (SES; Eisen-
hower & Blacher, 2006). Higher SES is associated
with lower risk for psychiatric disorders (Emerson
et al., 2010) and fewer symptoms of depression,
anxiety, and despair among parents of children
with ID (Khamis, 2007). However, findings
regarding SES are less robust in culturally diverse
samples. For example, SES was not found to be
protective for Latina mothers perceptions of
family quality of life (Cohen et al., 2014), nor
was SES a significant moderator of the association
between child behavior problems and maternal
mental health among South Asian mothers
residing in the United Kingdom (Hatton &
Emerson, 2009). Other work suggests that the
specific components of SES might have different
effects across cultural groups; income may be
more important for Latina mothers well-being,
while education may be more important for
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nonLatino White (NLW) mothers well-being
(Eisenhower & Blacher, 2006).
Associations Between Child Behavior
Problems and Maternal Mental Health
Reduced emotion regulation capabilities among
children with ID contribute to increased internal-
izing and externalizing behavior problems relative
to typically developing peers (Baker et al., 2003).
A robust finding in the literature examining
families of children with ID is the importance of
child behavior problems or difficult temperament
in predicting elevated maternal distress (Baker et
al., 2003; Baker, Blacher, & Olsson, 2005; Gray et
al., 2011; Hauser-Cram et al., 2001; Herring et al.,
2006; McConkey, Truesdale-Kennedy, Chang,
Jarrah, & Shukri 2008; Most, Fidler, Booth-
LaForce, & Kelly, 2006), parenting stress (Hassall
et al., 2005; Neece & Baker, 2008), and less
positive impact from the child (Blacher & Baker,
2007; Bostrom, Broberg, & Bodin, 2011). This
pattern of findings is consistent regardless of the
childs specific ID-related syndrome (Blacher &
McIntyre, 2006). Although most of the existing
literature has employed composite measures of
behavioral problems in the child with ID, a small
subset of research has examined internalizing
and externalizing behaviors separately. These
studies have documented cross-sectional associa-
tions of both internalizing and externalizing
behavior problems with poorer maternal mental
health (Gray et al., 2011; Hastings, Daley, Burns,
& Beck, 2006).
Longitudinal research demonstrates that asso-
ciations between child behavior problems (as
assessed using total problems and internalizing
scales) and maternal mental health are bidirec-
tional over time (Baker et al., 2003; Hastings et
al., 2006). Associations between child internaliz-
ing problems and maternal distress persist into
adulthood (Orsmond, Seltzer, Krauss, & Hong,
2003), and behavior problems predict families
likelihood of seeking out-of-home placements
for young adults with ID (McIntyre, Blacher, &
Baker, 2002). These bidirectional, persistent
associations between child behavior problems
and maternal well-being highlight the need for
early intervention to alter these patterns of
family influence.
Although child behavior problems have been
examined frequently as a predictor of maternal
mental health, few studies have examined the
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2015, Vol. 120, No. 2, 145165
nature of this association in depth. A small body
of work has found that the association between
maternal depressive symptoms and child behavior
problems is stronger when the mother displays
high criticism and low warmth (Lancaster, Balling,
Hastings, & Lloyd, 2014) or reports less optimism
(Baker et al., 2005). The literature would benefit
from more nuanced examinations of potential
moderators of this association to determine if the
strength or nature of the association between
child behavior problems and maternal mental
health varies according to other psychosocial,
demographic, or cultural factors. By obtaining a
more complete understanding of how these
variables interrelate, future research will be able
to examine the underlying causal processes for
different subgroups of parents. In turn, this may
inform intervention targets (e.g., improving the
quality of the mother-child relationship or target-
ing child behavior problems) and will provide
insight regarding which families are more likely to
benefit from intervention (e.g., parents who display
high levels of criticism or low warmth).
Latina Mothers of Children With ID
A major weakness of the literature examining
parental adjustment to childhood disability is the
limited consideration of cultural factors. Since the
meaning and processes underlying parental ad-
justment to childhood ID may be influenced by
cultural values and beliefs, the generalizability of
the extant literature examining caregivers of
children with ID is questionable. Here, we focus
on Latina mothers. Latina/o refers to the
ethnicity of individuals who self-identify as being
from a heritage, nationality group, lineage, or
country of birth (themselves or their ancestors) of
a Spanish-speaking country, including Cuba,
Mexico, and Puerto Rico, and South or Central
America, regardless of race (United States Office
of Management and Budgets, 1997).
Latina mothers of children with intellectual
and development disabilities report elevated
depressive symptoms, physical health problems,
and lower morale than both NLW caregivers
(Blacher & McIntyre, 2006; Blacher, Shapiro,
Lopez, Diaz, & Fusco, 1997) and Latina noncare-
givers (Blacher, Lopez, et al., 1997). Given
findings that Latino children with ID are four
times more likely than their NLW peers to remain
in the home into adulthood (Blacher & McIntyre,
2006), caretaking responsibilities often continue
K. A. Long et al.
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over the mothers lifespan. Disparities in caregiv-
ers mental health persist, as well. Latina mothers
of adults with ID report elevated depressive
symptomatology (Magana, 1999; Magana, Seltzer,
& Krauss, 2004; Magana, Seltzer, Krauss, Rubert,
& Szapocznik, 2002), which is exacerbated in the
presence of family problems (Magana, 1999;
Magana et al., 2004; Magana, Seltzer, Krauss,
Rubert, et al., 2002; Magana, Schwartz, Rubert,
Szapocznik, & Floyd, 2006). Compared to
matched Latina noncaregivers, midlife Latina
caregivers have twice the risk for depression, and
older Latina caregivers have 5 and 3.8 times greater
risk for heart problems (coronary heart disease,
myocardial infarction, angina, or other heart
condition) and arthritis-related functional impair-
ments, respectively (Magana & Smith, 2006).
Older Latina mothers who co-reside with adult
children with developmental disabilities also
smoke more and see a doctor less regularly than
noncaregivers (Magana & Smith, 2008). These
findings suggest that Latina caregivers are at risk
for longer-term mental and physical health
problems, which may adversely affect the likeli-
hood of engaging in supportive parenting prac-
tices over their lifespan.
Caregiver mental health may be particularly
important among Latino families. Latino adults
rely more on family support than formal mental
health services and are more likely to reside with
their families as compared to NLWs (Snowden,
2007). Home-based caretaking is also consistent
with previous research with Latino families of
individuals with disabilities, which has empha-
sized the central role of familism (Magana, 1999).
Familism is characterized by interdependence and
prioritizing the needs of the family over those of
the individual (Marn & Marn, 1991), and persists
across levels of acculturation among Latino
families (Sabogal, Marn, Otero-Sabogal, Marn,
& Perez-Stable, 1987). Thus, this family orienta-
tion may contribute to the increased salience and
longevity of caretaking responsibilities in Latino
families in general, and in Latina mothers in
particular. Familism may also contribute to
patterns of home-based caretaking documented
in Latino families.
Family factors appear to be particularly
influential for Latina mothers mental health.
For example, family problems are a stronger
predictor of depressive symptoms in Latina than
NLW mothers of adult children with ID (Magana
et al., 2004). This aligns with family-oriented
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2015, Vol. 120, No. 2, 145165
cultural values in which the healthy functioning
of the family is of utmost importance to caregivers
and, therefore, Latina mothers may be more
tuned into family functioning as a determinant
of their own well-being. However, the literature is
mixed with regard to whether this strong family
orientation is a risk factor, a protective factor, or
both. For example, higher levels of familism have
been shown to be protective for family quality of
life when there is a child with ID (Cohen et al.,
2014). These findings suggest that more research is
needed to understand how cultural beliefs interact
with life stressors and maternal mental health.
In addition to familistic values, traditional
gender ideals often place mothers in primary
caretaking roles and may intensify the extent to
which they attend to the needs of the family
(Pinquart & Sorenson, 2005). This is consistent
with marianismo, in which the Latina ideal of
femininity has been traditionally characterized by
modesty, virtue, and selfless caretaking for the
family (Stevens, 1973). Thus, Latina culture
celebrates females role as nurturer for their
children. Children with higher caretaking needs
(e.g., children with ID) may intensify Latina
mothers identification with their caretaking role.
In this regard, a small body of work has
demonstrated that Latina mothers report higher
positive impact of parenting a child with a
disability than NLW mothers of children with
disabilities (Blacher & Baker, 2007; Blacher,
Begum, Marcoulides, & Baker, 2013) and Latina
mothers of typically developing children (Blacher
et al., 2013). Together, this small body of work
suggests a complex picture of maternal adjustment
to having a child with ID.
The degree to which Latina mothers are
integrated into mainstream American culture is
also related to their mental and physical health,
though the literature has documented both
positive and negative effects of acculturation
(Lara, Gamboa, Kahramanian, Morales, & Bau-
tista, 2005). Acculturation is a multidimensional
construct that includes birth place, language use,
ethnic identity, traditionalism, familism, and
cultural knowledge and behaviors (Escobar &
Vega, 2000). Despite this broad conceptualization
of acculturation, previous research indicates that
multidimensional measures of acculturation pro-
vide limited value above and beyond narrower
measures of acculturation, such as language use
(Escobar & Vega, 2000). In this regard, mothers
who speak English may be more likely to interface
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productively with the healthcare system and with
English-speaking mothers of children with ID
(Santisteban & Mitrani, 2002), which may reduce
feelings of isolation or self-blame for their childs
symptoms. More acculturated mothers also may
espouse American ideals emphasizing multiple
female roles (i.e., employee, spouse, communi-
ty member) in addition to that of mother,
which may provide multiple sources from which
to bolster their self-worth. Indeed, the number of
roles reported by mothers is linearly related to
maternal well-being among highly acculturated
Latina mothers, but this is not associated with
well-being in less-acculturated mothers (Eisen-
hower & Blacher, 2006). This pattern of findings
may be related to the tendency for females
identity as caretaker to be valued more than
other roles in traditional Latino culture (see
previous discussion of marianismo). Finally,
among Latina mothers of adults with ID, lower
levels of acculturation are related to higher
caregiver distress (Magana, Schwartz, Rubert,
Szapocznik, & Floyd, 2006). Taken together, the
existing, small body of research suggests that
culture is related to caretaking attitudes and
maternal emotional adjustment, though findings
may vary according to Latina mothers degree
of acculturation.
Aims and Hypotheses
Associations between maternal mental health and
child behavior problems are well documented in
the extant literature. Maternal distress also appears
to be higher among Latina mothers of individuals
with ID compared to NLW mothers of individ-
uals with ID and Latina noncaregivers. However,
little is known about the risk factors for elevated
distress among Latina mothers of children with ID
and the relation to child characteristics (e.g.,
internalizing and externalizing problems) and
cultural factors. The present study addresses these
gaps by (1) assessing whether child behavior
problems predict maternal distress and/or mediate
the association between Latina ethnicity and
elevated maternal distress and (2) examining
potential moderators of the association between
maternal mental health and child behavior
problems, including socioeconomic, cultural,
and child-related factors.
We hypothesized that Latina mothers of
children with ID would report greater distress
(global distress, depressive symptoms, and somat-
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2015, Vol. 120, No. 2, 145165
ic symptoms) than NLW mothers of children with
ID and NLW and Latina comparison mothers.
Among mothers of children with ID, we expected
that Latina mothers distress would be heightened
in the presence of elevated child behavior
problems. This association was expected to be
moderated by familistic values and language
acculturation. Here, we expected that mothers
familistic values would increase the salience of
their childrens maladaptive symptoms and,
therefore, the strength of the association between
child behavior problems and maternal mental
health would be stronger in the presence of high
familism. With regard to language acculturation,
we expected that associations between child
behavior problems and maternal distress would
be stronger among mothers with lower levels of
English language acculturation. The question of
whether or not child behavior problems mediate
the association between ethnicity and maternal
distress was considered exploratory; therefore, no
a priori hypotheses were offered.
Method
Participants
Families (N 5 200) were recruited into a
communitywide study focused primarily on
siblings of children with ID (Kao et al., 2011;
Lobato et al., 2011; Long et al., 2013). This is the
first publication from this study that focuses on
maternal mental health. Recruitment was based
on ethnicity and disability status such that half of
the sample consisted of families of a child with an
ID (n 5 50 Latino, n 5 50 NLW) and the other
half were matched comparisons (n 5 50 Latino,
n 5 50 NLW).
For this study, Latino was defined as one or
both parents self-identifying as first or second
generation Latino. All NLW families self-identi-
fied as Caucasian using ethnic origin categories
from the National Latino and Asian American
Study and the U.S. Census (Alegria et al., 2004).
The inclusion criteria for all families included the
following: (1) a child age 3 to 18 years old (the
index child) and (2) at least one unaffected child
age 8 to 15 years old (referred to as the sibling). In
the families of children with ID, the index child
had an ID diagnosis made at least 6 months prior
to the familys participation in the study; the
diagnosis was confirmed by research staff. Fami-
lies of children with ID were excluded if the target
sibling had an ID diagnosis or serious medical
K. A. Long et al.
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illness; comparison families were excluded if any
child had an ID diagnosis or serious medical
illness. One parent (96% biological mothers) and
one sibling from each family participated in the
study. This yielded a final sample of 192 families
in which the mother was the parent participant (n
5 97 Latino, n 5 95 NLW). Due to the nature of
the research questions, the analyses in the present
article focused on the subset of mothers who had
a child with ID (n 5 48 Latino and n 5 50 NLW
mothers of children with ID). Descriptive com-
parisons with non-ID families are included as
preliminary results in order to contextualize
primary findings.
ID and comparison families were recruited
over 2.5 years via hospital-based general and
specialty pediatric programs, community agen-
cies, pediatricians offices, public and private
schools, and word of mouth. Medical practices
and community organizations in southeastern
New England were identified, and recruitment
procedures were implemented in all practices and
organizations that agreed to participate. All
recruitment materials had both English and
Spanish versions. We attempted to match com-
parison families to ID families based on gender of
the sibling and index child, the siblings birth
order relative to the index child, the siblings age,
and the familys socioeconomic status. Due to the
multiple inclusion criteria, 57% of families who
were screened were eligible for the study; 87% of
eligible families enrolled (see Kao et al., 2011;
Lobato et al., 2011, for additional details). There
were no significant differences in enrollment rates
among the four groups.
With parental consent, research staff obtained
educational or medical records documenting the
index childs ID diagnosis and most recent
developmental assessment results. The median
length of time between diagnosis and study
enrollment was 6.5 years. All children with ID
had significant cognitive impairment (48% mild,
30% moderate, 15% severe, and 7% profound
levels). Research staff administered the Vineland-
II Adaptive Behavior Scales (VABS-II) Daily
Living Skills: Personal Subdomain (Sparrow,
Cicchetti, & Balla, 2005) with parents to further
confirm ID diagnoses and determine the childs
level of adaptive and behavioral functioning;
scores ranged from 1 to 11 (M 5 6.28, SD 5
2.69). Some (but not all) children with ID had
additional diagnoses, as follows: chromosome
disorders such as Down syndrome (Latino ID 5
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30%, NLW ID 5 50%), autism spectrum
disorders (Latino ID 5 16%, NLW ID 5 24%),
neuromuscular disorders such as cerebral palsy
(Latino ID 5 8%, NLW ID 5 2%), or neurolog-
ical disorders such as seizure disorder (NLW ID 5
8%). Additional demographic characteristics of
the four groups are presented in Table 1.
Measures
Demographics. Parents provided information
about the gender and date of birth for all
household members. They also reported the
family size; the parents/primary caregivers edu-
cation level, occupation, marital status, place of
birth, and ethnicity; total family income; and
their perceptions of income (i.e., doing better/
worse financially than other families). A measure
of per capita income was calculated by dividing
parent-reported total household income by the
number of people living in the home.
Child factors. Parents completed the Vine-
land Adaptive Behavior Scales, 2nd edition
(VABS-2; de Bildt, Kraijer, Sytema, & Minderaa,
2005; Sparrow et al., 2005). Adaptive function-
ing and maladaptive behavior in the child
with ID was measured with the Daily Living
Skills (Personal Subdomain only) and Maladap-
tive Behavior Index, respectively. This is a
well-validated measure that has published both
English and Spanish versions. Better functioning
is indicated by higher scores on Daily Living
Skills and by lower scores on the Maladaptive
Behavior Index. As reported in the VABS-2
manual, the following cutoff scores were used to
indicate clinical levels of concern on the
Maladaptive Behavior Index: normal range (v-
score 1-17), elevated (v-score 18-20), and clinical
range (v-score 21-24).
Maladaptive behavior was assessed using the
internalizing (e.g., dependence on or avoidance
of others, eating or sleeping difficulties, sad or
anxious mood, avoidant of school or social
situations), externalizing (e.g., impulsiveness, ag-
gressiveness, stubbornness), and index scores. In
the current sample, Cronbachs alpha was 0.80 for
internalizing (Latina mothers: alpha 5 0.81;

Table 1
Demographic Characteristics
Intellectual Disability No Intellectual Disability
Latina NonLatina Latina NonLatina
(n 5 48) (n 5 50) (n 5 49) (n 5 45)
Child Age (Years) 8.25 (3.59) 9.20 (4.35) 9.94 (4.55) 8.88 (4.17)
Child Gender (Female) 14 (29%) 13 (26%) 15 (31%) 14 (31%)
Parent Age (Years)*** 36.58 (5.61) 42.02 (5.18) 38.68 (6.00) 39.78 (6.52)
Number of Kids in Home** 3.2 2.7 2.7 2.5
Mother Employed (Full or part 23 (48%) 34 (68%) 32 (65%) 30 (67%)
time)
Mother Years of School*** 11.69 (4.22) 15.30 (1.50) 13.12 (3.24) 14.42 (1.91)
Primary Language (Spanish) 35 (73%) n/a 42 (86%) n/a
Immigration (Foreign-Born) 42 (88%) n/a 47 (96%) n/a
Country of Origin Dominican n/a Dominican n/a
Republic (44%) Republic (51%)
Guatemala (19%) Colombia (18%)
Puerto Rico (19%) Guatemala (10%)
Colombia (4%) Puerto Rico (10%)
Mexico (4%) El Salvador (8%)
Other (10%) Other (3%)
Per Capita Income ($)*** $6,252 (4,544) $15,706 (6,071) $8,305 (4,751) $10,828 (5,948)
Family Structure (Two- 31 (65%) 49 (98%) 36 (74%) 24 (53%)
parent)***
**p , .01. ***p , .001.

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2015, Vol. 120, No. 2, 145165
NLW mothers: alpha 5 0.75), 0.85 for external-
izing (Latina mothers: alpha 5 0.88; NLW
mothers: alpha 5 0.79), and 0.89 for the
maladaptive behavior index score (Latina moth-
ers: alpha 5 0.92; NLW mothers: alpha 5 0.83).
For the Personal Subdomain scale, published
internal consistency split-half reliability coeffi-
cients range from .66 to .83 across children ages
318. To assess inter-rater reliability, a subset of
23 audiotaped interviews (11 Latino, 12 NLW)
was randomly selected for review by the bilingual
principal investigator (D. L.), who independently
scored the Personal Subdomain items. Intraclass
correlation coefficients were 0.99 for both Spanish
and English interviews.
Maternal distress. Mothers psychological
symptoms were assessed with the Brief Symptom
Inventory (BSI; Derogatis, 1993), a self-report
measure of psychological symptoms. Symptoms
are rated on a 5-point scale of distress. Based on
previous findings regarding mothers of children
with ID and the tendency for Latinos to express
emotions somatically (Lewis-Fernandez, Das,
Alfonso, Weissman, & Olfson, 2005), the global
severity index (GSI), somatic symptoms, and
depressive symptoms scales were used in the
present study. The BSI has demonstrated reli-
ability and validity, and it is published in English
and Spanish (Acosta, Nguyen, & Yamamoto,
1994). The test-retest reliability coefficient for the
GSI was 0.90 as reported by Derogatis (1993). In
the current sample, Cronbachs alpha was 0.96
for the GSI (Latina mothers: alpha 5 0.96; NLW
mothers: alpha 5 0.95), 0.87 for depression
symptoms (Latina mothers: alpha 5 0.85; NLW
mothers: alpha 5 0.90), and 0.81 for somatic
symptoms (Latina mothers: alpha 5 0.78; NLW
mothers: alpha 5 0.83). A T-score of 63 on the
GSI scale was used to indicate clinically signifi-
cant symptomatology.
Cultural factors. Parents completed the
Spanish or English version of The Familism Scale,
a 14-item measure of familistic cultural values
and attitudes (Sabogal et al., 1987). Items assess
obligation (e.g., Aging parents should live with
their relative), support (e.g., One can count on
help from his/her relatives to solve most prob-
lems), and families as referents (e.g., One
should be embarrassed about the bad things done
by his/her brothers or sisters). Higher scores
reflect greater familism. The Total Familism score
was used in current analyses. Validity has been
demonstrated with Mexican, Central American,
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Cuban, and Puerto Rican families (Sabogal et al.,
1987). Reliability was acceptable for the present
sample of Latino (alpha 5 0.81) and NLW (alpha
5 0.69) families.
Given findings that the strongest indicator of
acculturation is language preference (Escobar &
Vega, 2000), we measured language use as a
parsimonious proxy for acculturation. Mothers
completed the language factor of the Short
Acculturation Scale (Marn, Sabogal, Marn,
Otero-Sabogal, & Perez-Stable, 1987). Parents
responded to questions regarding language usage
on a 5-point Likert scale ranging from 1 (reflecting
only Spanish usage) to 5 (reflecting only English
usage). Higher scores reflect higher levels of
acculturation. This measure was completed by
the Latina subsample, in whom the alpha
coefficient for the 5-item language factor was 0.92.
Procedure
Families provided consent and assent prior to
completion of research tasks and chose whether
data collection would occur at the familys home
(74%), the research office (24%), or another
location (2%). Questionnaires were read aloud
to all participants. The majority of Latina parents
were interviewed in Spanish (72% of the ID
subgroup, 84% of the comparisons). All NLW
families were interviewed in English. The inter-
view-based method of data collection ensured that
we had complete data for each participating
family regardless of their literacy level. Families
were compensated for participation. All proce-
dures were approved by the Institutional Review
Board at Rhode Island Hospital.
Data Analysis
The purpose of enrolling matched comparison
groups was to determine if the findings are unique
to Latino families or to families of children with
ID, or if findings reflect a phenomenon that is
more broadly applicable across child develop-
ment. Preliminary analyses compared the four
groups on demographic, cultural, and maternal
distress variables. The subsequent primary analy-
ses focused on the subsample of Latina and NLW
mothers of children with ID.
Preliminary analyses employed chi square or
one-way ANOVA to compare Latino and NLW
index and comparison families on demographic
variables (child with ID and sibling age, gender,
and birth order; maternal age, education, and
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employment status; family per capita and per-
ceived income; number of children and adults in
the home; and marital status), cultural variables
(language acculturation, familism), and maternal
distress. Demographic variables found to be
significantly different among the four groups
were entered as covariates in subsequent analyses.
Associations between maternal distress and ID-
related factors (child adaptive functioning and
maladaptive behavior) were assessed using Pear-
son correlations.
The first research question was assessed using
multiple regression in order to evaluate associa-
tions among demographic variables, child mal-
adaptive behavior, and maternal distress among
families of children with ID. Ethnicity was
entered into the first step, demographic variables
(one- vs. two-parent households, parent age,
number of children in the home, and per capita
income) were entered into the second step, and
child maladaptive behavior was entered into the
third step of separate regressions predicting
maternal global distress and depressive and
somatic symptoms. These regressions were repeat-
ed using the child internalizing and externalizing
maladaptive behavior scores in place of the index
maladaptive behavior score in step 3.
Next, mediation analyses were conducted to
assess whether child maladaptive behavior medi-
ates the relationship between ethnicity and
maternal distress in families of children with ID.
This involved testing (1) the total effect (path c) of
the independent variable (ethnicity) on the
dependent variable (maternal distress), which
includes both the direct and indirect effects; (2)
the direct effect (path c ) of the independent
variable (ethnicity) on the dependent variable
(maternal distress); and (3) the indirect effect (path
Figure 1. The current study tested whether child maladaptive behaviors mediate the association
between Latina ethnicity and self-reported distress (global distress, somatic symptoms, and depressive
symptoms) among mothers of children with intellectual disability (ID).
152
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a 3 b) of the independent variable (ethnicity) on
the dependent variable (maternal distress) via the
proposed mediator (child maladaptive behavior).
Path a is the effect of the independent variable
(ethnicity) on the mediator (child maladaptive
behavior), while path b is the effect of the
mediator (child maladaptive behavior) on the
dependent variable (maternal distress), after par-
tialling out the effect of the independent variable
(ethnicity). See Figure 1 for a graphical represen-
tation of the mediation model.
According to the recommendations by
Preacher and Hayes (2008), we used a boot-
strapping sampling procedure to assess indirect
effects. Bootstrapping is a nonparametric resam-
pling procedure in which a large number of
samples (1,000 in the current study) are drawn
with replacement from the full dataset. Using
these resamples, approximations of the bias
corrected point estimate and confidence intervals
were calculated for the indirect effect. A point
estimate for an indirect effect was considered
significant if zero was not included in the 95%
confidence interval.
Finally, the nature of the association between
child maladaptive behavior and maternal distress
in Latina families was examined using moderation
analyses. Based on the existing literature, the
following variables were examined as possible
moderators of this association: demographic (one-
versus two-parent households, maternal educa-
tion, and per capita income), ID-related (adaptive
functioning: personal skills), and cultural (fami-
lism and language acculturation) factors. Mal-
adaptive behavior and the possible moderator
were entered into the first step, and the interac-
tion between maladaptive behavior and the
possible moderator was entered into the second
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2015, Vol. 120, No. 2, 145165
step of regression models predicting global
maternal distress.
Results
Preliminary Analyses
Demographic variables. Demographic char-
acteristics of Latina and NLW families with and
without a child with ID were examined (Table 1).
Chi square analyses revealed significant group
differences in the distribution of one- versus two-
parent households among the four groups, such
that almost all NLW mothers had two-parent
households. One-way ANOVAs revealed group
differences in number of children in the home,
parent years of school, parent age, and per capita
income. Fishers least significant difference (LSD)
post-hoc tests showed that Latino families of
children with ID had significantly more children
in the home, and Latina mothers of children
with ID had fewer years of school than mothers
in the other three groups. Latina mothers of
children with ID were significantly younger and
had significantly lower per capita income than
NLW mothers of children with and without ID,
and they were marginally younger and had
marginally lower per capita income than Latina
comparison mothers.
The four groups did not differ on birth order,
age, or gender of the index child or sibling.
Despite differences in per capita income, groups
did not differ according to perceived income (i.e.,
doing better/worse than other families) or on
maternal employment status. Based on these
preliminary findings, the following variables were
entered as covariates into subsequent regression
analyses: one- versus two-parent household,
number of kids in the home, parent age, and per
capita income.
ID-related variables. Across the entire sam-
ple, child internalizing and externalizing scores
were significantly correlated (r 5 .38). One-way
ANOVAs revealed group differences across mea-
sures of child maladaptive behaviors (index:
F[3,188] 5 28.68, p , .001; externalizing:
F[3,188] 5 4.92, p 5 .003; internalizing:
F[3,188] 5 27.39, p , .001). LSD post-hoc tests
indicated that Latina children with ID had
significantly higher index scores and internalizing
symptoms compared to the other three groups;
Latino children with ID had significantly more
externalizing symptoms than Latino comparison
children and marginally more externalizing symp-
K. A. Long et al.
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toms than NLW comparison children. Within the
ID subgroup, Latina and NLW children with ID
did not differ on adaptive functioning (Daily
Living Skills: Personal Subdomain).
Maternal distress. One-way ANOVAs re-
vealed significant group differences in global distress
(F[3,188] 5 3.30, p 5 .02), depressive symptoms
(F[3,188] 5 4.92, p , .003), and somatic symptoms
(F[3,188] 5 3.98, p 5 .009). LSD post-hoc tests
showed that Latina mothers of children with ID
reported significantly more depressive symptoms
and somatic symptoms and marginally higher levels
of global distress than NLW mothers of children
with ID and both Latina and NLW mothers of
matched comparison children (Figure 2).
Cultural variables. Cultural variables were
compared among Latina and NLW families with
and without a child with ID. One-way ANOVAs
revealed group differences in familism (F[3,188] 5
20.18, p , .001), and LSD post-hoc tests indicated
that Latina mothers of children with ID reported
significantly higher levels of familism compared to
the other three groups. Given the absence of
Spanish-speaking NLW mothers, language accul-
turation was compared only between the two
groups of Latina mothers using independent
samples t-tests. Latina mothers of children with
ID had marginally higher levels of acculturation
(i.e., spoke English more frequently) than Latina
comparison mothers (t[95] 5 1.91, p 5 .06).
Associations of child disability factors with
maternal distress. In the ID subgroups, maladap-
tive behavior was associated with all three
measures of maternal distress (GSI: r 5 .37, p ,
.001; depressive symptoms: r 5 .32, p , .01;
somatic symptoms: r 5 .32, p , .01). Adaptive
functioning (VABS Personal Subdomain) was not
significantly associated with maternal distress.
Disability and Sociodemographic
Predictors of Maternal Distress
Multiple regression was used to assess the influence
of demographic and ID-related variables on
maternal distress among families of children with
ID. Ethnicity was entered into the first step, other
demographic variables were entered into the
second step, and maladaptive behavior was entered
into the third step of separate regressions predicting
global distress and depressive and somatic symp-
toms among mothers of children with ID (see
Table 2). These regressions were repeated using the
child internalizing and externalizing maladaptive
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Figure 2. Latina mothers of children with intellectual disability (ID) report significantly higher levels
of global distress, somatic symptoms, and depressive symptoms compared to all three other groups, as
measured by T-scores on the Brief Symptom Inventory. NLW 5 NonLatino White.

behavior scores in place of the index maladaptive ethnicity to predict maternal global distress.
behavior score in step 3. Ethnicity was no longer significant once other
In the model predicting maternal global demographic factors were taken into account. In
distress, there was an initial trend for Latina the final model, higher maternal global distress

Table 2
Multiple Regression Analyses Examining Demographic Factors and Maladaptive Behavior as Predictors of
Distress Among Mothers of Children With ID
Global Distress Somatic Symptoms Depressive Symptoms
2 2
Beta Adj R Beta Adj R Beta Adj R2
Step 1 .02+ .06* .07**
+
Ethnicity .17 .26* .28**
Step 2 .02 .02 .07*
Ethnicity .00 .18 .10
# Kids in home .01 .01 .05
Mother age 2.13 .03 2.10
One- vs. two-parent .18 .00 .19
Per capita income 2.05 2.13 2.06
Step 3 .12** .09** .11**
Ethnicity 2.06 .13 .06
# Kids in home 2.03 2.02 .02
Mother age 2.10 .05 2.08
One- vs. two-parent .13 2.04 .15
Per capita income 2.04 2.13 2.06
Maladaptive behavior .35** .28** .23*
+
p , .10. *p , .05. **p , .01.

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was significantly associated with higher scores on
the maladaptive behavior index, independently of
demographic variables (Table 2). The same pat-
tern of results was obtained when externalizing (b
50.18, p 5 .10) and internalizing (b 5 0.23, p 5
.05) were entered together in place of the index
maladaptive behavior score.
In the model predicting maternal somatic
symptoms, Latina ethnicity initially predicted
somatization among mothers of children with
ID but was no longer significant once other
demographic factors were taken into account. In
the final model, maternal somatic symptoms were
significantly associated with higher scores on the
maladaptive behavior index, independently of
demographic variables (Table 2). When child
externalizing and internalizing scores were entered
in place of the index maladaptive behavior score,
neither one independently, significantly predicted
somatic symptoms among mothers of children
with ID (bs # .17, ps $ .16).
In the model predicting maternal depressive
symptoms, Latina ethnicity initially predicted
depression among mothers of children with ID
but was no longer significant once other demo-
graphic factors were taken into account. In the
final model, maternal depression symptoms were
significantly associated with higher scores on the
maladaptive behavior index, independently of
demographic variables (Table 2). When external-
izing and internalizing scores were entered in
place of the index maladaptive behavior score,
neither one independently, significantly predicted
depressive symptoms among mothers of children
with ID (b # .17, ps $ .15).
Child Behavior Problems as a Mediator of
the Association Between Ethnicity and
Maternal Distress
Due to the high correlation between the ID
(ethnicity) and the demographic covariates (i.e.,
per capita income, parent age, single parent status,
and number of children in the home), the
mediation analyses were carried out without
covariates. Mediation results are presented in
Table 3. Latina ethnicity significantly predicted
child maladaptive behavior (the a path), and
maladaptive behavior significantly predicted all
three measures of maternal distress (the b path for
maternal global distress, somatic symptoms, and
depressive symptoms). For all three measures of
maternal distress, the indirect effect of ethnicity
K. A. Long et al.
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on maternal distress (a 3 b path) did not include
zero in the confidence interval (global distress: CI
5 0.724.90; somatic symptoms: CI 5 0.354.40;
depressive symptoms: CI 5 0.363.75); this
implies that maladaptive behavior mediates the
association between Latina ethnicity and in-
creased maternal distress among mothers of
children with ID.
Moderators of the Association Between
Child Maladaptive Behavior and Latina
Maternal Distress
The final set of analyses further examined the
association between child maladaptive behavior
and maternal global distress. Given demographic
differences between Latina and NLW mothers of
children with ID, we conducted these analyses
only with the Latina ID subsample. The following
variables were examined as possible moderators of
this association: sociodemographic (one- versus
two-parent households, maternal education, per
capita income), child ID-related (adaptive func-
tioning: personal skills), and cultural (familism
and language acculturation) factors.
Findings showed that the association between
child maladaptive behavior index scores and
maternal distress was stronger for single-parent
Latino families (interaction term DR2 5 .12, p 5
.01), those that reported higher levels of familism
(interaction term DR2 5 .09, p 5 .03), and those
who reported lower language acculturation (interac-
tion term DR2 5 .10, p 5 .02; Figures 3 and 4). All
other moderation analyses were nonsignificant. The
same pattern of results was obtained when child
internalizing scores were used in place of maladap-
tive behavior index scores as a focal predictor of
maternal distress; findings were less consistent when
child externalizing scores were used.
Discussion
Preliminary analyses suggested that Latina moth-
ers of children with ID report more distress than
NLW mothers of children with ID and both
Latina and NLW matched comparison mothers.
When focusing just on the subsample of mothers
of children with ID, ethnicity was no longer a
significant predictor of maternal distress once
other demographic variables (single parent house-
hold, per capita income, maternal age, and
number of children in the household) were
entered into the model. None of the individual
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Table 3
Results of Mediation Analysis
Coefficients (Unstandardized)
Independent Effect of IV Effect of M Direct Effect Indirect Effect Total Effect
Variable (IV) Mediator (M) Dependent Variable (DV) on M (a path) on DV (b path) (c9 path) (a 3 b path) (c path)
Ethnicity Mal Behavior Global Distress 1.24* 1.97* 1.66 2.44* 4.10+
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Ethnicity Mal Behavior Somatic Symptoms 1.24* 1.48* 3.28 1.83* 5.11*
Ethnicity Mal Behavior Depressive Symptoms 1.24* 1.34* 4.22* 1.65* 5.88*
Note. Mal Behavior 5 Maladaptative Behavior.
*p , .05. +p , .10.
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Figure 3. Among Latina mothers of children with intellectual disability (ID), the association between
child maladaptive behavior and maternal distress is stronger in families that report higher familism. This
association is significant at medium (p5.007) and high (p5.003) but not low levels of familism.

Figure 4. Among Latina mothers of children with intellectual disability (ID), the association
between child maladaptive behavior and maternal distress is stronger in families that report lower
levels of language acculturation. This association is significant at medium (p5.002) and low (p5.002)
but not high levels of language acculturation.

K. A. Long et al. 157

AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 145165
demographic predictors were significant predic-
tors of maternal distress when they were all
entered together, which suggests substantial over-
lap among these demographic variables. Thus, the
current findings suggest that the constellation of
demographic risk factors, versus Latina ethnicity
per se, contributes to increased distress in Latina
mothers of children with ID.
The current findings suggest that child
maladaptive behavior mediates the association
between Latina ethnicity and maternal distress
(global distress, somatic symptoms, and depres-
sive symptoms) among mothers of children with
ID. The current analyses also identified several
risk factors for elevated distress among Latina
mothers of children with ID. Specifically, the
association between maternal distress and child
behavior problems among Latina mothers of
children with ID was stronger for single-parent
households and for mothers who reported more
familistic values and lower acculturation (i.e., less
English usage). Child adaptive functioning did
not moderate associations between child and
maternal functioning.
Associations between child behavior problems
and maternal distress have been demonstrated
previously (Baker et al., 2003; Baker et al., 2005;
Blacher & McIntyre, 2006; Gray et al., 2011;
Hassall et al., 2005; Hauser-Cram et al., 2001;
Herring et al., 2006; McConkey et al., 2008; Most
et al., 2006; Neece & Baker, 2008). The current
work builds on this previous research by contex-
tualizing maternal distress in relation to a compar-
ison group of Latino and NLW mothers of
children without ID and by investigating effects
of both child internalizing (e.g., sad/anxious
mood, social isolation) and externalizing (e.g.,
impulsiveness, aggressiveness) behavior problems
on maternal distress. This contrasts most previous
research that employed composite scores of child
maladaptive behavior (e.g., Hauser-Cram et al.,
2001; Herring et al., 2006; McConkey et al., 2008;
Most et al., 2006).
Current findings are consistent with previous
work in families of children with ID that
documented cross-sectional effects of internaliz-
ing and externalizing symptoms on maternal
mental health (Gray et al., 2011; Hastings et al.,
2006). In addition, current findings that child
adaptive functioning (personal skills) are not
significantly associated with maternal mental
health suggest that mothers more easily accept
their childs caretaking needs than challenging
158
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behaviors. Rather, challenging behaviors may
serve as a risk factor for maternal distress in the
context of childhood ID. Mechanisms underlying
the links between maternal distress and child
behavior problems were not assessed in the
present research. It is possible that this pattern
reflects the social/emotional caretaking context or
genetic similarity between mother and child.
Common genetic underpinnings may account
for elevations in both maternal and child distress.
Due to the enrollment of Latina and NLW
comparison mothers, we were able to put the
current sample and findings into context. Both
internalizing and externalizing problems were
highest in the Latino ID subgroup. This is
consistent with previous research documenting
significantly more maladaptive behaviors in
Puerto Rican than NLW adults with ID (Magana,
Seltzer, & Krauss, 2002). This has not been
examined previously in child/adolescent samples
with ID diagnoses. However, previous work with
children and young adults with autism spectrum
disorders has reported no differences in maladap-
tive behavior between Latino and NLW sub-
groups (Magana & Smith, 2006) or lower levels of
maladaptive behavior among the Latino children
with autism spectrum disorders (Magana, Lopez,
Aguinaga, & Morton, 2013). Thus, it is possible
that the severity of child behavior problems in
Latino children may vary by specific diagnosis,
but this requires further investigation.
The present study did not assess reasons
underlying elevated maladaptive behaviors in the
current sample of Latino children with ID. This
finding may be related to the service delivery
system (e.g., fewer services, difficulty communi-
cating with the healthcare system due to limited
English proficiency, less knowledge of available
services, or perceptions that existing services are
unnecessary or irrelevant for their familys
needs), the childrearing context (e.g., different
responses to the childs challenging behaviors),
or perceptions of the childs behavior (e.g.,
tendency to report more problems on standard-
ized measures). Similarly, it is possible that
Latino children with ID who have more behavior
problems are receiving more therapeutic services
and, therefore, are more likely to be recruited
into research studies. Findings related to higher
levels of problematic behaviors should be
confirmed with future research using multiple
informants and/or observational methods.
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The current study replicated findings that
Latina mothers of children with ID report more
distress than NLW mothers of children with ID
and Latina mothers of typically developing
children (Blacher, Lopez, Shapiro, & Fusco,
1997; Blacher & McIntyre, 2006). It extends
previous research by highlighting the other
demographic and child-related factors that may
contribute to the elevated distress reported by
Latina mothers of children with ID. Regardless of
the mechanisms underlying Latina mothers
distress, elevated distress among Latina mothers
of children with ID is important for two key
reasons. First, elevated distress and physical health
problems suggest that these mothers are a high-
risk group worthy of clinical attention themselves.
Second, the extant literature has documented the
importance of maternal mental health for their
childrens psychosocial outcomes (Green & Baker,
2011; Neece & Baker, 2008).
It is important to note that the effect of
ethnicity on maternal distress was no longer
significant once other demographic variables were
entered into the model. Although each factor
(single parent household, per capita income,
maternal age, and number of children in the
home) was associated with maternal distress in
bivariate analyses, none retained its significance
once all of these demographic factors were
considered together. This is consistent with high
levels of overlap among these variables; in other
words, the addition of other demographic vari-
ables did not increase the amount of variance in
maternal distress explained above and beyond
that of ethnicity alone.
One particularly interesting aspect of these
findings is that per capita income did not have a
significant, independent effect on maternal distress
once other variables were taken into account. This
contrasts previous work with NLW mothers that
showed higher SES to be protective against
maternal psychopathology and distress (Emerson
et al., 2010; Khamis, 2007). However, the current
results are consistent with previous findings that
SES is not protective for Latina mothers perceptions
of family quality of life (Cohen et al., 2014). This
lends further support to the idea that the protective
role of higher SES may differ according to ethnicity
and should be further examined in future work.
The question of whether or not SES is
important for maternal and/or family functioning
may be particularly relevant for families of
children with ID in light of previous findings
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that these families report significantly lower
income and higher dependence on means-tested
income support (e.g., social security) than families
who are not supporting a child with ID (Emerson,
2003; Fujiura, 1998; Fujiura & Yamaki, 1997).
Poorer financial status might be one additional
stressor for these families. Further, income is not
equal across racial/ethnic groups. Income is
significantly lower for Black and Latino families
with ID compared to their NLW counterparts
(Fujiura, 1998). Thus, Latina mothers of children
with ID have fewer economic resources, but this
does not account for elevated distress reported by
these mothers.
The current research also examined modera-
tors of the association between child maladaptive
behaviors and maternal distress among Latina
mothers of children with ID. Findings indicated
that this association was stronger for Latina
mothers who resided in single parent households,
reported more familistic values, and had lower
levels of English language acculturation. With
regard to single parent status, it is likely that the
task of managing challenging behaviors in the
child with ID is taxing and enduring, and single
mothers may perceive limited support in dealing
with these child-related stressors on a daily basis.
This may contribute to higher levels of perceived
stress and distress, though the mechanisms
underlying this finding were not evaluated in
the current study.
Familistic cultural values are likely to influ-
ence how Latina mothers conceptualize their
maternal role. When mothers identities are
closely aligned with caretaking, they may inter-
nalize their childs behavior problems and inter-
pret them as a reflection of their own parenting
shortcomings, which in turn may influence
mothers self-concept and mood. Maternal attri-
butions have been shown to be important among
Latina mothers of children with ID; Latina
mothers who believe that the child is not
responsible for his or her behavior problems are
less likely to respond aggressively toward the child
(Chavira, Lopez, Blacher, & Shapiro 2000).
Familism also may influence families decisions
to provide more care within the family versus
utilizing community services. This may contrib-
ute to Latina mothers perception that their
caretaking role for the child with ID is enduring.
Overall, the role of maternal attributions and
decision making about their childs behavior
problems should be examined further.
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From a clinical perspective, attribution-based
explanations of maternal distress are consistent
with the goals of cognitive restructuring interven-
tions. Conceptualizations of motherhood may be
revised to incorporate aspects of the childs
disability (i.e., behavior problems), and mothers
may be encouraged to develop more realistic
expectations about their childs behavior and their
role in managing the childs multiple develop-
mental and behavioral needs. Mothers also may
be encouraged to increase the degree to which
they identify with additional roles (e.g., spouse,
employee, community member) in addition to
that of caretaker. Mothers may benefit from
supportive, group-based interventions with other
Latina mothers of children with similar clinical
presentations for support in handling their
reactions to having temperamentally difficult
children. Finally, problem-solving skills may help
mothers handle objective stressors associated with
raising a child with ID in the presence of other
challenges, such as single parenthood, low in-
come, and multiple other children in the home.
Associations between child behavior prob-
lems and maternal distress are stronger among
Latina mothers with lower levels of English usage.
Given findings that language preference is the
strongest indicator of acculturation (Escobar &
Vega, 2000), the present study administered the
language subscale of the acculturation measure.
Thus, it is unclear whether findings reflect
acculturation, broadly defined, or the narrower
index of language preference. Less acculturated
Latina mothers speak primarily or solely Spanish,
which may limit opportunities for formal support
services and lead to perceptions that she is left
alone to handle the childs behavioral difficulties.
Indeed, limited English proficiency is associated
with higher expressed needs for family, social, and
community support among Latino families of
children with developmental disabilities, and lack
of Spanish materials and Spanish-speaking per-
sonnel contribute to parents dissatisfaction with
service providers (Bailey et al., 1999).
It is important to note that positive and
negative parent/family impact appear to be
independent of each other and can co-exist within
the same families. Many parents cope well with
ID-related stressors and acknowledge the positive
aspects of parenting children with intellectual and
behavioral difficulties (Blacher & McIntyre, 2006).
The co-occurrence of positive and negative
impact underscores the complexity of Latina
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caregivers adjustment to having a child with ID
and highlights the need for future research to
disentangle these findings, identify culturally
pertinent risk and protective factors, and inform
future, family-focused interventions.
Findings related to Latino samples may not be
comparable across all nationalities. The present
study enrolled a sample comprised primarily of
mothers from Central America and the Caribbean
islands (e.g., Puerto Rico and the Dominican
Republic). Although the scope of the current study
is insufficient to examine Latina mothers distress
according to country of origin, previous work has
found higher rates of depression in the general
population of Latino Americans from Puerto Rican
(6.9%) versus Cuban (2.5%) or Mexican descent
(2.8%; Oquendo et al., 2001). Thus, Puerto Rican
mothers residing in the United States may have
even higher risk for ongoing distress or develop-
ment of depression in the face of their childs ID.
Overall, the current findings extend previous
research examining maternal psychosocial func-
tioning in the context of a childs ID by
considering (1) the mediating role of child
behavioral problems and (2) cultural moderators
of the well-established associations between child
behavior problems and maternal distress. Al-
though findings are limited by some methodo-
logical factors (e.g., cross-sectional design and
potential respondent bias arising from the fact
that mothers reported on both their own mental
health and the childs behavior), the current
findings underscore the importance of consider-
ing sociocultural and demographic variables when
examining families responses to childhood ID.
Future work should further assess mechanisms
underlying increased behavioral problems and
maternal distress among Latino families of
children with ID and should continue to examine
the interplay among cultural, socioeconomic,
familial, and disability-related factors.
References
Acosta, F. X., Nguyen, L. H., & Yamamoto, J.
(1994). Using the Brief Symptom Inventory
to profile monolingual Spanish-speaking psy-
chiatric outpatients. Journal of Clinical Psychol-
ogy, 50(5), 723726. http://dx.doi.org/10.
1002/1097-4679(199409)50:5%3C723::AID-
JCLP2270500509%3E3.0.CO;2-M
Alegria, M., Vila, D., Woo, M., Canino, G.,
Takeuchi, D., Vera, M., Shrout, P. (2004).
Elevated Distress in Latina Caregivers
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 145165
Cultural relevance and equivalence in the
NLAAS instrument: Integrating etic and emic
in the development of cross-cultural measures
for a psychiatric epidemiology and services
study of Latinos. International Journal of
Methods in Psychiatric Research, 13, 270288.
http://dx.doi.org/10.1002/mpr.181
Bailey, D. B., Golden, R. N., Roberts, J., & Ford,
A. (2007). Maternal depression and develop-
mental disability: A research critique. Mental
Retardation and Developmental Disabilities Re-
search Reviews, 13(4), 321329. http://dx.doi.
org/10.1002/mrdd.20172
Bailey, D. B., Skinner, D., Correa, V., Arcia, E.,
Reyes-Blanes, M., Rodriguez, P., Skinner,
M. (1999). Needs and support reported by
Latino families of young children with
developmental disabilities. American Journal
on Mental Retardation, 104(5), 437451. http://
dx.doi.org/10.1352/0895-8017(1999)104%
3C0437:NASRBL%3E2.0.CO;2
Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K.,
Edelbrock, C. & Low, C. (2003). Pre-school
children with and without developmental
delay: Behaviour problems and parenting
stress over time. Journal of Intellectual Disability
Research, 47, 238249. http://dx.doi.org/10.
1046/j.1365-2788.2003.00484.x
Baker, B. L., Blacher, J., & Olsson, M. B. (2005).
Pre-school children with and without devel-
opmental delay: Behaviour problems, par-
ents optimism, and well-being. Journal of
Intellectual Disability Research, 49, 575590.
Blacher, J., & Baker, B. L. (2007). Positive impact
of intellectual disability on families. American
Journal of Mental Retardation, 112(5), 330348.
http://dx.doi.org/10.1352/0895-8017(2007)112%
5B0330:PIOIDO%5D2.0.CO;2
Blacher, J., Begum, G. F., Marcoulides, G. A., &
Baker, B. L. (2013). Longitudinal perspectives
of child positive impact on families: Rela-
tionship to disability and culture. American
Journal of Intellectual and Developmental Dis-
abilities, 118(2), 141155. http://dx.doi.org/
10.1352/1944-7558-118.2.141
Blacher, J., Lopez, S., Shapiro, J., & Fusco, J.
(1997). Contributions to depression in Latina
mothers with and without children with
retardation: Implications for caregiving. Fam-
ily Relations, 46(4), 325335. http://dx.doi.
org/10.2307/585093
Blacher, J., & McIntyre, L. L. (2006). Syndrome
specificity and behavioural disorders in young
K. A. Long et al.
EAAIDD
DOI: 10.1352/1944-7558-120.2.145
adults with intellectual disability: Cultural
differences in family impact. Journal of
Intellectual Disability Research, 50(3), 184198.
http://dx.doi.org/10.1111/j.1365-2788.2005.
00768.x
Blacher, J., Shapiro, J., Lopez, S., Diaz, L., &
Fusco, J. (1997). Depression in Latina mothers
of children with mental retardation: A
neglected concern. American Journal of Mental
Retardation, 101, 483496.
Bostrom, P. K., Broberg, M., & Bodin, L. (2011).
Childs positive and negative impacts on
parents A person-oriented approach to
understanding temperament in preschool
children with intellectual disabilities. Research
in Developmental Disabilities, 32(5), 18601871.
http://dx.doi.org/10.1016/j.ridd.2011.03.017
Bourke, J., Ricciardo, B., Bebbington, A., Aiberti,
K., Jacoby, P., Dyke, P., Leonard, H.
(2008). Physical and mental health in mothers
of children with Down syndrome. The Journal
of Pediatrics, 153(3), 320326. http://dx.doi.
org/10.1016/j.jpeds.2008.02.047
Chavira, V., Lopez, S. R., Blacher, J., Shapiro, J.
(2000). Latina mothers attributions, emo-
tions, and reactions to the problem behaviors
of their children with developmental disabil-
ities. Journal of Child Psychology, Psychiatry, and
Allied Disciplines, 41(2), 245252. http://dx.
doi.org/10.1017/S0021963099005144
Cohen, S. R., Holloway, S. D., Domnguez-Pareto,
I., & Kuppermann, M. (2014). Receiving or
believing in family support? Contributors to
the life quality of Latino and non-Latino
families of children with intellectual disability.
Journal of Intellectual Disability Research, 58,
333345.
de Bildt, A., Kraijer, D., Sytema, S., & Minderaa,
R. (2005). The psychometric properties of the
Vineland Adaptive Behavior Scales in chil-
dren and adolescents with mental retardation.
Journal of Autism and Developmental Disorders,
35, 5362. http://dx.doi.org/10.1007/s10803-
004-1033-7
Derogatis, L. R. (1993). Brief Symptom Inventory
(BSI): Administration, scoring, and procedure
manual. Minneapolis, MN: National Com-
puter Systems, Inc.
Eisenhower, A., & Blacher, J. (2006). Mothers of
young adults with intellectual disability:
Multiple roles, ethnicity, and well-being.
Journal of Intellectual Disability Research,
161
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 145165
50(12), 906916. http://dx.doi.org/10.1111/j.
1365-2788.2006.00913.x
Emerson, E. (2003). Mothers of children and
adolescents with intellectual disability: Social
and economic situation, mental health status,
and the self-assessed social and psychological
impact of the childs difficulties. Journal of
Intellectual Disability Research, 47(45), 385399.
http://dx.doi.org/10.1046/j.1365-2788.2003.
00498.x
Emerson, E., McCulloch, A., Graham, H.,
Blacher, J., Llwellyn, G. M., & Hatton C.
(2010). Socioeconomic circumstances and risk
of psychiatric disorders among parents of
children with early cognitive delay. American
Journal of intellectual and Developmental Disabil-
ities, 115, 3042. http://dx.doi.org/10.1352/
1944-7558-115.1.30
Escobar, J. I., & Vega, W. A. (2000). Mental health
and immigrations AAAs: Where are we and
where do we go from here? Journal of Nervous
and Mental Disease, 188(11), 736740. http://dx.
doi.org/10.1097/00005053-200011000-00003
Fenning, R. M., & Baker, J. K. (2012). Mother-
child interaction and resilience in children
with early developmental risk. Journal of
Family Psychology, 26(3), 411420. http://dx.
doi.org/10.1037/a0028287
Fujiura, G. T. (1998). Demography of family
households. American Journal on Mental Retarda-
tion, 103(3), 225235. http://dx.doi.org/10.1352/
0895-8017(1998)103%3C0225:DOFH%3E2.
0.CO;2
Fujiura, G. T., & Yamaki, K. (1997). An analysis of
ethnic variation in developmental disability:
Prevalence and household economic status.
Mental Retardation, 35(4), 286294. http://dx.
doi.org/10.1352/0047-6765(1997)035%3C0286:
AOEVID%3E2.0.CO;2
Gau, S. S., Chiu, Y. N., Soong, W. T., & Lee, M. B.
(2008). Parental characteristics, parenting style,
and behavioral problems among Chinese
children with Down syndrome, their siblings
and controls in Taiwan. Journal of the Formosan
Medical Association, 107(9), 693703. http://
dx.doi.org/10.1016/S0929-6646(08)60114-X
Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker,
B. L. (2009). Resilience and the course of daily
parenting stress in families of young children
with intellectual disabilities. Journal of Intellec-
tual Disability Research, 53(12), 981997. http://
dx.doi.org/10.1111/j.1365-2788.2009.01220.x
162
EAAIDD
DOI: 10.1352/1944-7558-120.2.145
Gray, K. M., Piccinin, A. M., Hofer, S. M.,
Mackinnon, A., Bontempo, D. E., Einfeld, S.
L., Tonge B. J. (2011). The longitudinal
relationship between behavior and emotional
disturbance in young people with intellectual
disability and maternal mental health. Re-
search in Developmental Disabilities, 32(3),
11941204. http://dx.doi.org/10.1016/j.ridd.
2010.12.044
Green, S., & Baker, B. (2011). Parents emotion
expression as a predictor of childs social
competence: children with or without intel-
lectual disability. Journal of Intellectual Disabil-
ity Research, 55(3), 324338. http://dx.doi.org/
10.1111/j.1365-2788.2010.01363.x
Hassall, R., Rose, J., & McDonald, J. (2005).
Parenting stress in mothers of children with
an intellectual disability: The effects of
parental cognitions in relation to child
characteristics and family support. Journal of
Intellectual Disability Research, 49(6), 405418.
http://dx.doi.org/10.1111/j.1365-2788.2005.
00673.x
Hastings, R. P., Daley, D., Burns, C., & Beck, A.
(2006). Maternal distress and expressed emotion:
Cross-sectional and longitudinal relationships
with behavior problems of children with intel-
lectual disabilities. American Journal of Mental
Retardation, 111, 4861. http://dx.doi.org/10.
1352/0895-8017(2006)111%5B48:MDAEEC%
5D2.0.CO;2
Hatton, C., & Emerson, E. (2009). Does socioeco-
nomic position moderate the impact of child
behaviour problems on maternal health in
South Asian families with a child with intellec-
tual disabilities? Journal of Intellectual and
Developmental Disabilities, 34, 1016. http://dx.
doi.org/10.1080/13668250802676012
Hauser-Cram, P., Warfield, M. E., Shonkoff, J. P.,
Krauss, M. W., Sayer, A., & Upshur, C. C.
(2001). Children with disabilities: A longitu-
dinal study of child development and parent
well-being. Monographs of the Society for
Research in Child Development, 66, 1114.
Herring, S., Gray, K., Taffe, J., Tonge, B.,
Sweeney, D., & Einfeld, S. (2006). Behaviour
and emotional problems in toddlers with
pervasive developmental disorders and devel-
opmental delay: Associations with parental
mental health and family functioning. Journal of
Intellectual Disability Research, 50(12), 874882.
http://dx.doi.org/10.1111/j.1365-2788.2006.
00904.x
Elevated Distress in Latina Caregivers
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 145165
Kao, B., Lobato, D., Grullon, E., Cheas, L.,
Plante, W., Seifer, R., & Canino, G. (2011).
Recruiting Latino and non-Latino families in
pediatric research: Considerations from a
study on childhood disability. Journal of
Pediatric Psychology, 36, 10931101.
Khamis, V. (2007). Psychological distress among
parents of children with mental retardation in
the United Arab Emirates. Social Science in
Medicine, 64, 850857.
Lancaster, R. L., Balling, K., Hastings, R., &
Lloyd, T. J. (2014). Attributions, criticism and
warmth in mothers of children with intellec-
tual disability and challenging behaviour: A
pilot study. Journal of Intellectual Disability
Research, 58, 10601071.
Lara, M., Gamboa, C., Kahramanian, M. I.,
Morales, L. S., & Bautista, D. E. H. (2005).
Acculturation and Latino health in the United
States: A review of the literature and its
sociopolitical context. Annual Review of Public
Health, 26, 36797. http://dx.doi.org/10.1146/
annurev.publhealth.26.021304.144615
Lewis-Fernandez, R., Das, A. K., Alfonso, C.,
Weissman, M., & Olfson, M. (2005). Depres-
sion in US Hispanics: Diagnostic and man-
agement considerations in family practice.
Journal of the American Board of Family
Medicine, 18(4), 282296. http://dx.doi.org/
10.3122/jabfm.18.4.282
Lloyd, T., & Hastings, R. P. (2008). Psychological
variables as correlates of adjustment in
mothers of children with intellectual disabil-
ities: Cross-sectional and longitudinal rela-
tionships. Journal of Intellectual Disability
Research, 52, 3748. http://dx.doi.org/10.
1111/j.1365-2788.2007.00974.x
Lloyd, T., & Hastings, R. P. (2009). Parental locus
of control and psychological well-being in
mothers of children with intellectual disabil-
ity. Journal of Intellectual and Developmental
Disabilities, 34(2), 104115. http://dx.doi.org/
10.1080/13668250902862074
Lobato, D., Kao, B., Plante, W., Seifer, R.,
Grullon, E., Cheas, L., & Canino, G. (2011).
Psychological and school functioning of
Latino siblings of children with intellectual
disability. Journal of Child Psychology and
Psychiatry, 52(6), 696703. http://dx.doi.org/
10.1111/j.1469-7610.2010.02357.x
Long, K., Lobato, D., Kao, B., Plante, W.,
Grullon, E., Cheas, L. & Seifer, R.
(2013). Perceptions of emotion expression
K. A. Long et al.
EAAIDD
DOI: 10.1352/1944-7558-120.2.145
and sibling-parent emotion communication
in Latino and nonLatino white siblings of
children with intellectual disabilities. Journal
of Pediatric Psychology, 38, 551562.
Magana, S. M. (1999). Puerto Rican families caring
for an adult with mental retardation: Role of
familism. American Journal of Mental Retardation,
104(5), 466482. http://dx.doi.org/10.1352/
0895-8017(1999)104%3C0466:PRFCFA%3E2.0.
CO;2
Magana, S., Seltzer, M. M., & Krauss, M. W. (2004).
Cultural context of caregiving: Differences in
depression between Puerto Rican and non-
Latina white mothers of adults with mental
retardation. Mental Retardation, 42, 111.
http://dx.doi.org/10.1352/0047-6765(2004)42%
3C1:CCOCDI%3E2.0.CO;2
Magana, S., Seltzer, M. M., Krauss, M. W. (2002).
Service utilization patterns of adults with
intellectual disabilities: A comparison of Puerto
Rican and Non-Latino White families. Journal of
Gerontological Social Work, 37(34), 6586.
http://dx.doi.org/10.1300/J083v37n03_06
Magana, S., Seltzer, M. M., Krauss, M. W., Rubert,
M. P., & Szapocznik, J. (2002). Well-being and
family role strains among Cuban American
and Puerto Rican mothers of adults with
mental retardation. Journal of Human Behavior
in the Social Environment, 5, 3155. http://dx.
doi.org/10.1300/J137v05n03_03
Magana, S., Schwartz, S. J., Rubert, M. P.,
Szapocznik, J., & Floyd, F. (2006). Hispanic
caregivers of adults with mental retardation:
Importance of family functioning. American
Journal of Mental Retardation, 111(4), 250262.
http://dx.doi.org/10.1352/0895-8017(2006)111%
5B250:HCOAWM%5D2.0.CO;2
Magana, S., & Smith, M. J. (2006). Health
outcomes of midlife and older Latina and
Black American mothers of children with
developmental disabilities. Mental Retarda-
tion, 44(3), 224234. http://dx.doi.org/10.
1352/0047-6765(2006)44%5B224:HOOMAO%
5D2.0.CO;2
Magana, S., & Smith, M. J. (2008). Health behaviors,
service utilization, and access to care among
older mothers of color who have children with
developmental disabilities. Intellectual and De-
velopmental Disabilities, 46(4), 267280. http://
dx.doi.org/10.1352/1934-9556(2008)46%5B267:
HBSUAA%5D2.0.CO;2
Magana, S., Lopez, K., Aguinaga, A., Morton, H.
(2013). Access to diagnosis and treatment
163
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 145165
services among Latino children with autism
spectrum disorders. Intellectual & Developmen-
tal Disabilities, 51(3), 14153. http://dx.doi.
org/10.1352/1934-9556-51.3.141
Marn, G., Sabogal, F., Marn, B., Otero-Sabogal, R.,
& Perez-Stable, E. (1987). Development of a
short acculturation scale for Hispanics. Hispanic
Journal of Behavioral Science, 9(2), 183205.
http://dx.doi.org/10.1177/07399863870092005
Marn, G., & Marn, B. V. (1991). Research with
Hispanic populations. Newbury Park, CA: Sage
Publications, Inc.
McConkey, R., Truesdale-Kennedy, M., Chang,
M. Y., Jarrah, S., & Shukri, R. (2008). The
impact on mothers of bringing up a child
with intellectual disabilities: A cross-cultural
study. International Journal of Nursing Studies,
45, 6574. http://dx.doi.org/10.1016/j.ijnurstu.
2006.08.007
McIntyre, L. L., Blacher, J., & Baker, B. L. (2002).
Behaviour/mental health problems in young
adults with intellectual disability: The impact
on families. Journal of Intellectual Disability
Research, 46(3), 239249. http://dx.doi.org/
10.1046/j.1365-2788.2002.00371.x
Most, D. E., Fidler, D. J., Booth-LaForce, C., &
Kelly, J. (2006). Stress trajectories in mothers
of young children with Down syndrome.
Journal of Intellectual Disability Research, 50(7),
501514. http://dx.doi.org/10.1111/j.1365-2788.
2006.00796.x
Neece, C., & Baker, B. (2008). Predicting maternal
parenting stress in middle childhood: The
roles of child intellectual status, behaviour
problems and social skills. Journal of Intellectual
Disability Research, 50(12), 11141128. http://
dx.doi.org/10.1111/j.1365-2788.2008.01071.x
Niccols, A., Milligan, K., Chisholm, V., &
Atkinson, L. (2011). Maternal sensitivity
and overt aggression in young children
with Down syndrome. Brain Cognition, 77,
153158.
Norlin, D., & Broberg, M. (2013). Parents of
children with and without intellectual disabil-
ity: Couple relationship and individual well-
being. Journal of Intellectual Disability Research,
57(6), 552566. http://dx.doi.org/10.1111/j.
1365-2788.2012.01564.x
Olsson, M. B., & Hwang, C. P. (2001). Depression
in mothers and fathers of children with
intellectual disability. Journal of Intellectual
Disability Research, 45(6), 535543. http://dx.
doi.org/10.1046/j.1365-2788.2001.00372.x
164
EAAIDD
DOI: 10.1352/1944-7558-120.2.145
Olsson, M. B., & Hwang, C. P. (2006). Well-being,
involvement in paid work and division of
child-care in parents of children with intellec-
tual disabilities in Sweden. Journal of Intellectual
Disability Research, 50, 963969. http://dx.doi.
org/10.1111/j.1365-2788.2006.00930.x
Olsson, M. B., & Hwang, C. P. (2008). Socioeco-
nomic and psychological variables as risk and
protective factors for parental well-being in
families of children with intellectual disabili-
ties. Journal of Intellectual Disability Research,
52(12), 11021113. http://dx.doi.org/10.1111/
j.1365-2788.2008.01081.x
Oquendo, M., Ellis, S., Greenwald, S., Malone,
K., Weissman, M., & Mann, J. (2001). Ethnic
and sex differences in suicide rates relative to
major depression in the United States.
American Journal of Psychiatry, 158(10), 1652
1658. http://dx.doi.org/10.1176/appi.ajp.158.
10.1652
Orsmond, G. I., Seltzer, M. M., Krauss, M. W., &
Hong, J. (2003). Behavior problems in adults
with mental retardation and maternal well-being:
Examination of the direction of effects. American
Journal of Mental Retardation, 108(4), 257271.
http://dx.doi.org/10.1352/0895-8017(2003)108%
3C257:BPIAWM%3E2.0.CO;2
Preacher, K. J., & Hayes, A. F. (2008). Asymptotic
and resampling strategies for assessing and
comparing indirect effects in multiple medi-
ator models. Behavior Research Methods,
40(3), 879891. http://dx.doi.org/10.3758/
BRM.40.3.879
Pinquart, M., & Sorensen, S. (2005). Ethnic
differences in stressors, resources, and psy-
chological outcomes of family caregiving: A
meta-analysis. Gerontologist, 45, 90106. http://
dx.doi.org/10.1093/geront/45.1.90
Sabogal, F., Marn, G., Otero-Sabogal, R., Marn,
B., & Perez-Stable, E. (1987). Hispanic
familism and acculturation: What changes
and what doesnt? Hispanic Journal of Behav-
ioral Science, 9(4), 397412. http://dx.doi.org/
10.1177/07399863870094003
Smith, L. E., Seltzer, M. M., & Greenberg, J. S.
(2012). Daily health symptoms of mothers of
adolescents and adults with Fragile X Syn-
drome and mothers of adolescents and adults
with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 42, 1836
1846. http://dx.doi.org/10.1007/s10803-011-
1422-7
Elevated Distress in Latina Caregivers
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 145165
Snowden, L. R. (2007). Explaining mental health
treatment disparities: Ethnic and cultural
differences in family involvement. Culture,
Medicine, and Psychiatry, 31(3), 389402.
http://dx.doi.org/10.1007/s11013-007-9057-z
Sparrow, S. S., Cicchetti, D. V., Balla, D. A. (2005).
Vineland Adaptive Behavior Scales: (Vineland II).
Livonia, MN: Pearson Assessments.
Santisteban, D., & Mitrani, V. (2002). The
influence of acculturation processes on the
family. In K. M. Chun, P. B. Organista, & G.
Marn (Eds.), Acculturation: Advances in theory,
measurement, and applied research (pp. 121
136). Washington, DC: American Psycholog-
ical Association.
Stevens, E. P. (1973). Marianismo: The other face
of machismo in Latin America. In A.
Pescatelo (Ed.), Hembra y macho en Latino-
America: Ensaios., (pp. 123135). Pittsburgh,
PA: University of Pittsburgh Press.
Tekinarslan, I. C. (2013). A comparison study of
depression and quality of life in Turkish
mothers of children with Down syndrome,
cerebral palsy, and autism spectrum disorder.
Psychological Reports, 112, 266287.
United States Office of Management and Budgets.
(1997). The 1997 revisions to the standards for
the classification of federal data on race and
ethnicity. Washington, DC: Author. Retrieved
from http://www.whitehouse.gov/omb/fedreg/
1997standards.html.
K. A. Long et al.
EAAIDD
DOI: 10.1352/1944-7558-120.2.145
Yildirim, S. H. & Basbakkal, Z. (2010). Depression
among mothers of children and adults with
an intellectual disability in Turkey. Interna-
tional Journal of Nursing Practice, 16(3), 248
253. http://dx.doi.org/10.1111/j.1440-172X.
2010.01837.x
Received 10/28/2013, accepted 7/12/2014.
This work was supported by grant number
1R01HD050557 awarded by the National Institute
of Child Health and Human Development to Debra
Lobato, PhD (principal investigator).
Authors:
Kristin A. Long, Bradley Hasbro Childrens
Research Center and the Department of Psychi-
atry and Human Behavior, Alpert Medical School
of Brown University; Barbara Kao, Department
of Pediatrics of Rhode Island Hospital, Alpert
Medical School of Brown University; Wendy
Plante, Ronald Seifer, and Debra Lobato, Bradley
Hasbro Childrens Research Center and the
Department of Psychiatry and Human Behavior,
Alpert Medical School of Brown University.
Correspondence concerning this article should be
addressed to Kristin A. Long, Department of
Psychological and Brain Sciences, Boston Univer-
sity, 648 Beacon Street, Room 510, Boston, MA
02215, USA (e-mail: kalong@bu.edu).
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2015, Vol. 120, No. 2, 189190
Resumes en Francais
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Taffe, et Kim M. Cornish
Les difficultes dattention, dimpulsivite, et dhy-
peractivite sont considerees comme etant aussi
communes chez les enfants ayant une deficience
intellectuelle (DI) que chez les enfants sans DI.
Malgre cela, il y a un manque dechelles pour
evaluer specifiquement la symptomatologie reliee
au TDAH chez les enfants et les adolescents
presentant une DI. Cet article decrit le developpe-
ment et levaluation dun outil dont le repondant
cible est un enseignant; la Scale of Attention in
Intellectual Disability (SAID). Un sondage aupres de
176 enseignants travaillant aupres denfants ages de
5 a 13 ans et ayant des DI de differents niveaux a
indique que le T-SAID est un outil de mesure fiable
et valide. Lintegration de cette echelle avec la
recherche clinique et neuropsychologique savere
prometteuse quant a lamelioration de la compre-
hension de la nature des difficultes dattention
chez les populations presentant une DI.
Attitudes et reactions affectives des Tawanais
envers des personnes et des collegues de travail
presentant une deficience intellectuelle
Tsu-Hsuan Hsu, Ying-Ting Huang, Yi-Hui Liu,
Joseph Ososkie, Juliet Fried, et Jill Bezyak
Cette etude a evalue les attitudes demployes
tawanais envers des personnes ayant une de-
ficience intellectuelle (DI) et a leurs collegues de
travail ayant ce diagnostic et dont lemploi est
supervise. Les resultats indiquent que les attitudes
generales des employes tawanais envers les
personnes ayant une DI ainsi que leurs reactions
affectives quant a leurs collegues de travail
presentant ce meme diagnostic etaient positives.
Ces decouvertes vont a lencontre des croyances
preetablies voulant que les tawanais aient ten-
dance a entretenir un stigma social au sujet des
personnes et des collegues de travail presentant
une DI. Les resultats ont egalement demontre que
Resumes en Francais
EAAIDD
DOI: 10.1352/1944-7558-120.2.189
les participants qui avaient travaille depuis
plus longtemps avec des personnes ayant une DI
avaient tendance a presenter des attitudes plus
positives envers ces derniers. En consequence, la
promotion de formations pour des emplois
supervises et la promotion doffres demplois de
ce type pour les personnes qualifiees et ayant une
DI sont recommandees.
Developpement du langage chez des
nourrissons et de jeunes enfants presentant le
syndrome du X fragile: changements temporels
et role de lattention
Sara T. Kover, Lindsay M. McCary, Alexandra
M. Ingram, Deborah D. Hatton, et Jane E.
Roberts
Le syndrome du X fragile (SXF) est associe a
dimportants retards de langage et de communi-
cation, ainsi qua des problemes dattention. Cette
etude a examine les habiletes langagieres precoces
chez des nourrissons et de jeunes enfants ayant le
SXF (n 5 13) et a considere lattention visuelle
comme etant un predicteur de ces habiletes. Les
resultats ont demontre une augmentation des
habiletes langagieres au cours de letude ayant
etant realisee sur une periode de 9 a 24 mois, avec
des correlations moderees entre les evaluations
du langage. En comparaison aux nourrissons se
developpant normalement (n 5 11), les habiletes
langagieres etaient differees au-dela de lage
chronologique et des attentes relatives a leur
niveau de developpement. Des aspects de latten-
tion visuelle precoce ont predit les habiletes
langagieres ulterieures. Lattention visuelle atypi-
que est un aspect important du phenotype du SXF
ayant des implications pour le developpement
precoce du langage, en particulier dans le
domaine du vocabulaire.
Les predicteurs de detresse en lien avec lenfant
et la culture chez des meres dorigine latino
americaine ayant un enfant presentant une
deficience intellectuelle
Kristin A. Long, Barbara Kao, Wendy Plante,
Ronald Seifer, et Debra Lobato
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AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 189190
Lobjectif de cet article est detudier les liens entre
des facteurs socioeconomiques et culturels, des
caracteristiques de lenfant, et la detresse mater-
nelle chez des familles denfants ayant une
deficience intellectuelle (DI). Des meres dorigine
latino-americaine et dautres dorigine caucasienne,
mais non latino-americaine, ayant des enfants avec
et sans DI (N 5 192), ont rapporte des informa-
tions au sujet de lidentite familiale, de laccultur-
ation langagiere, de la detresse maternelle, du
fonctionnement adaptatif et des problemes de
comportement de leur enfant. Parmi les meres
denfants ayant une DI, des niveaux plus eleves de
problemes de comportement chez lenfant etaient
des mediateurs a lassociation entre lethnicite
latino-americaine et la presence dun haut niveau
de detresse maternelle. Les liens entre les proble-
mes de comportement des enfants et la detresse
maternelle chez les meres dorigine latino-amer-
icaine ayant un enfant presentant une DI etaient
moderes par la monoparentalite, une identite
familiale plus elevee, et un faible usage de langlais.
Ainsi, letude conclut que les facteurs culturels et
les caracteristiques de lenfant contribuent a la
detresse elevee des meres dorigine latino-ameri-
caine ayant un enfant presentant une DI.
Autisme et fardeau financier des familles: lien
avec lassurance maladie
Susan L. Parish, Kathleen C. Thomas, Chris-
tianna S. Williams, et Morgan K. Crossman
La relation entre le fardeau financier des menages
et lassurance maladie des enfants presentant un
trouble du spectre de lautisme (TSA) qui est
assuree par leur famille (n 5 316) a ete etudiee a
laide des donnees regroupees de lan 2000 a 2009
du Medical Expenditure Panel Survey Data (un
sondage regroupant diverses informations au sujet
des depenses medicales aux Etats-Unis). Les
mesures du fardeau financier des menages compre-
naient toutes les depenses de lannee precedente
ainsi que les depenses en tant que pourcentage du
revenu des familles. Celles-ci ont depense en
moyenne 9,70 $ par 1000 $ de revenu en frais
medicaux pour leur enfant. Les familles dont les
enfants etaient assures au prive etaient cinq fois
plus susceptibles davoir a effectuer des depenses
personnelles comparativement aux enfants bene-
ficiant dune assurance publique. Les types de
190
EAAIDD
DOI: 10.1352/1944-7558-120.2.189
depenses personnelles les plus communs etaient
relatifs a la medication, aux services de sante en
consultation externe, et aux soins dentaires. Les
resultats de cette etude mettent en evidence
linadequation de lassurance privee afin de pour-
voir aux besoins denfants ayant un TSA.
Effet de lexposition a des evenements
potentiellement traumatiques sur des personnes
ayant une deficience intellectuelle
Rony Berger, Marc Gelkopf, Kerem Versano-
Mor, et Carmit-Noa Shpigelman
Cette etude a explore la prevalence de la
symptomatologie post-traumatique (SPT) et de
problemes fonctionnels chez des Israeliens pre-
sentant une deficience intellectuelle (DI), vivant
dans des residences specialisees, et ayant ete
exposes a la violence politique. Lechantillon etait
compose de 196 residents exposes a des attaques
chroniques de missiles et de 91 residents ny ayant
pas ete exposes. Les resultats ont demontre que la
SPT et les problemes fonctionnels etaient plus
eleves dans le groupe ayant ete expose a des
attaques chroniques de missiles que dans le
groupe nayant pas ete expose a ces evenements.
Toutefois, la SPT et les problemes fonctionnels
retrouves chez ces personnes ayant une DI
demeurent plus faibles que ce qui a ete observe
dans la population generale exposee aux memes
evenements. Lexposition etait liee a la SPT ainsi
quaux problemes fonctionnels, ce qui suggere
que les personnes ayant une DI reagissent par
rapport a la violence politique, bien que les
mecanismes sous-jacents a cette relation ne soient
pas clairs. Les implications des resultats pour la
recherche, les intervenants et la politique sont
discutees.
La traduction des resumes en Francais a ete coordonnee
par AAIDD Chapitre Quebec avec la collaboration
de Melissa Clark, Justine Grenier-Martin, Marie-Josee
Leclerc, Carole Legare, Marie Millau, Julie Maltais, et
Diane Morin.
The French translation of the abstracts has been
coordinated by AAIDD Quebec Chapter with the
collaboration of Melissa Clark, Justine Grenier-
Martin, Marie-Josee Leclerc, Carole Legare, Marie
Millau, Julie Maltais, and Diane Morin.
Resumes en Francais
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 191192
Resumenes al Espanol
Desarrollo de una Nueva Escala de Puntuacion
de la Atencion para Ninos con Discapacidad
Intelectual: Escala de Atencion para la
Discapacidad Intelectual (EADI)
Nerelie C. Freeman, Kylie M. Gray, John R.
Taffe, y Kim M. Cornish
Se piensa que las dificultades de atencion,
impulsividad e hiperactividad son comunes entre
los ninos con discapacidad intelectual (DI) tal
como en ninos sin DI. A pesar de esto, existe una
carencia de escalas que midan especficamente los
sntomas del TDAH en ninos y adolescentes con
DI. Este artculo describe el desarrollo y evalua-
cion de una medicion completada por profesores,
la Escala de Atencion para la Discapacidad
Intelectual (EADI). Una encuesta aplicada a una
comunidad de 176 profesores de ninos de entre 5
y 13 anos de edad con DI en todos los niveles de
dificultades indicaron que el EADI es una
medicion confiable y valida. La integracion de
esta escala e investigacion clnica neuropsicologica
concentra un potencial mejoramiento de nuestra
comprension sobre la naturaleza de las dificul-
tades de atencion para la poblacion con DI.
Actitud y Reacciones Afectivas de los
Taiwaneses hacia Individuos y Companeros de
Trabajo que Presentan Discapacidad Intelectual
Tsu-Hsuan Hsu, Ying-Ting Huang, Yi-Hui Liu,
Joseph Ososkie, Juliet Fried, y Jill Bezyak
Este estudio investigo la actitud de los empleados
Taiwaneses hacia individuos con Discapacidad
Intelectual (DI) y sus companeros de apoyo. Los
hallazgos indicaron que en general las actitudes de
los empleados Taiwaneses hacia personas con DI
y sus reacciones afectivas hacia sus companeros de
trabajo con DI eran positivas. Estos resultados
fueron opuestos a las creencias previas sobre que
la poblacion Taiwanesa tiende a presentar estig-
mas sociales hacia las personas y companeros de
trabajo con DI. Los productos del estudio
tambien mostraron que los participantes que
poseen un contacto mas extenso con sus colegas
con DI tienden a mostrar una actitud mas positiva
hacia ellos. Por lo tanto, se recomienda promover
Resumenes al Espanol
EAAIDD
DOI: 10.1352/1944-7558-120.2.191
entrenamientos de empleo con apoyo y oportu-
nidades para personas con DI calificadas.
Desarrollo del Lenguaje en bebes y preescolares
que presentan Sndrome de X Fragil: Cambios
en el Tiempo y el Rol de la Atencion
Sara T. Kover, Lindsay M. McCary, Alexandra
M. Ingram, Deborah D. Hatton, y Jane E.
Roberts
El sndrome de X Fragil (SXF) esta asociado a
dificultades significativas del lenguaje y retrasos en
la comunicacion, junto con problemas en la
atencion. Este estudio investigo las habilidades
tempranas de lenguaje en bebes y preescolares con
SXF (n 5 13) y considero la atencion visual como
un predictor de aquellas habilidades. Encontra-
mos que las habilidades de lenguaje se incremen-
taron en el grupo de estudio de 9 a 24 meses, con
una correlacion moderada entre las evaluaciones
de lenguaje. En comparacion a bebes que
presentan un desarrollo tpico (n 5 11), las
habilidades de lenguaje se vieron retrasadas mas
alla de la edad cronologica y las expectativas sobre
el nivel de desarrollo. Aspectos relacionados con
la atencion visual predijeron habilidades poster-
iores de lenguaje. Una atencion visual atpica es
un importante aspecto del fenotipo del SXF que
presenta ademas, implicancias para el desarrollo
temprano del lenguaje, particularmente en el area
del vocabulario.
Predictores de Angustia Culturales y Familiares
Entre los Cuidadores Latinos de Ninos con
Discapacidad Intelectual
Kristin A. Long, Barbara Kao, Wendy Plante,
Ronald Seifer, y Debra Lobato
El objetivo de este artculo es examinar asocia-
ciones entre factores socioeconomicos, culturales
y relativos al propio nino con la angustia
materna entre familias de ninos con discapacidad
intelectual (DI). Madres Latinas y no Latinas
blancas (NLB) de ninos con y sin DI (N 5 192)
entregaron informacion sobre familismo, len-
guaje, aculturacion, angustia materna, funciona-
miento adaptativo del nino y problemas de
191
AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
2015, Vol. 120, No. 2, 191192
conducta infantil. Entre las madres de ninos con
DI, los niveles altos de problemas conductuales
mediaron la asociacion entre la etnia Latina y
una elevada angustia de las madres. Las asocia-
ciones entre problemas conductuales de los
ninos y la angustia materna en madres Latinas
de ninos con DI fueron moderadas por el estado
civil monoparental, un mayor familismo y un
menor dominio del ingles. As, factores cultur-
ales y relativos al propio nino contribuyen a
elevar la angustia entre madres Latinas de ninos
con DI.
Autismo y Carga Financiera para las Familias:
Asociacion con la Cobertura del Seguro de Salud
Susan L. Parish, Kathleen C. Thomas, Chris-
tianna S. Williams, y Morgan K. Crossman
Examinamos la relacion entre carga financiera
familiar y la cobertura de seguro de salud infantil
en familias (n 5 316) que cran ninos con
Trastornos del Espectro Autista (TEA), usando
una base de datos de los anos 20002009
provenientes de la Encuesta del Panel de Gastos
Medicos. Las mediciones de la carga financiera
familiar incluyeron gastos propios en el ano
anterior y gastos como un porcentaje del ingreso
familiar. Las familias gastaron en promedio $ 9.70
por $ 1,000 del ingreso en el costo de cuidados de
la salud de su nino. Fue aproximadamente 5 veces
mas probable que las familias que cuidan ninos
con seguro privado tuvieran que desembolsar
dinero propio comparado con las familias con
ninos asegurados en el sistema publico. El
desembolso propio mas comun fue gastos en
medicamentos, servicios de consulta externa y
cuidado dental. Este estudio entrega evidencia de
la relativa falta de adecuacion de los sistemas de
seguros privados en cubrir las necesidades de los
ninos con TEA.
192
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DOI: 10.1352/1944-7558-120.2.191
Impacto de la Exposicion a Potenciales Eventos
Traumaticos en Personas con
Discapacidad Intelectual
Rony Berger, Marc Gelkopf, Kerem Versano-
Mor, y Carmit-Noa Shpigelman
Este estudio exploro la prevalencia de la Sintoma-
tologa Pos-Traumatica (SPT) y problemas funcio-
nales entre individuos israelitas con Discapacidad
Intelectual (DI) que viven en residencias de cuidado
con apoyo y que han experimentado violencia
poltica. La muestra incluyo 196 residentes expues-
tos a ataques con misiles y 91 residentes con DI que
no fueron expuestos. Los resultados muestran que la
SPT y los problemas funcionales son mayores en
el grupo expuesto comparado con el grupo de
personas no expuestas, aunque sigue siendo bajo
comparado con la poblacion general expuesta. Se
encontro que la exposicion se relaciona con la SPT y
problemas de funcionamiento, sugiriendo que las
personas con DI son reactivas a la violencia poltica,
aunque los mecanismos de base no estan claros.
Ademas, se discuten las implicancias para investiga-
dores, cuidadores y polticos.
La traduccion de los resumenes al Espanol ha sido
coordinada por la Universidad Catolica del Maule,
Talca, Chile. Con la colaboracion de Camila
Manrquez-Morales, Nicole Abdala-Rebolledo, Ca-
mila Carreno-Valdes, Marcela Garrido-Valenzuela,
Barbara Machuca-Jorquera, Sandra Sanchez-Pena,
Daniela Jorquera-Bustamante, Mara Pomes-Correa,
Manuel Monzalve-Macaya, y Juan Lagos-Luciano.
The translation into Spanish has been coordinated by
Catolica del Maule University, Talca, Chile; with the
colaboration of Camila Manrquez-Morales, Nicole
Abdala-Rebolledo, Camila Carreno-Valdes, Marcela
Garrido-Valenzuela, Barbara Machuca-Jorquera, San-
dra Sanchez-Pena, Daniela Jorquera-Bustamante, Mara
Pomes-Correa, Manuel Monzalve-Macaya, and Juan
Lagos-Luciano.
Resumenes al Espanol
Reproduced with permission of the copyright owner. Further reproduction prohibited without
permission.