Use of Promotoras de Salud in Interventions with Latino Families of Children with IDD

Abstract

Families of children with intellectual and developmental disabilities (IDDs) experience unique rewards and challenges caring for their child. Many family interventions have been developed over the years to provide supports to these families and their children. However, few interventions have included racial and ethnic minority families and few researchers have developed and tested culturally competent interventions specifically for these populations. Because Latinos represent the largest racial/ethnic population, they also represent a large proportion of children with IDD and their families. We provide back-ground on parent and family interventions, and those developed for use with Latino families. We then describe the use of the promotora de salud model as a culturally competent intervention mode for Latino families of children with IDD. We describe two parent training programs that used this mode, the results of their evaluation studies, and discuss lessons learned in the context using of a community-based research approach. Lastly, we explore the question of why promotoras were successful in promoting change among mothers of children with IDD by analyzing focus-group data across projects. Our findings suggest that role modeling and the collaborative style promotoras used in providing education promoted change among participants. In conclusion, more interventions are needed to serve Latino children with IDD and their families. The promotora de salud model holds promise as a mode of intervention delivery for these families.

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From Sandra Magaña, Kristina Lopez, Rebecca Paradiso de Sayu and Elizabeth Miranda, Use of
Promotoras de Salud in Interventions with Latino Families of Children with IDD. In: Robert M. Hodapp,
editor, International Review of Research in Developmental Disabilities, Vol. 47, Burlington: Academic
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CHAPTER TWO
Use of Promotoras de Salud in
Interventions with Latino Families
of Children with IDD
Sandra Magaña*
,1
, Kristina Lopez
†
, Rebecca Paradiso de Sayu
{
,
Elizabeth Miranda
{
*Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois, USA
†
School of Social Work, California State University, Long Beach, California, USA
{
University of Wisconsin-Madison, Madison, Wisconsin, USA
1
Corresponding author: e-mail address: maganas@uic.edu
Contents
1. Introduction 40
1.1 Parenting Children with IDD 40
1.2 Research on Latino Families of Children with IDD 41
2. Background 43
2.1 Interventions for Parents and Families of Children with IDD 43
2.2 Interventions for Latino Parents and Families of Children with IDD 47
2.3 Borrowing a Model from Public Health: Promotoras de Salud 51
3. Using Promotoras de Salud to Deliver Family Interventions to Latino Families 52
3.1 Description of Our Projects 54
3.2 Lessons Learned About Conducting a Successful Promotora Project Using
CBPR Approaches 58
4. How Do Promotoras Foster Change? 61
4.1 Methods 63
4.2 Results 63
4.3 Discussion 66
5. Conclusion 67
Acknowledgments 69
References 69
Abstract
Families of children with intellectual and developmental disabilities (IDDs) experience
unique rewards and challenges caring for their child. Many family interventions have been
developed over the years to provide supports to these families and their children. How-
ever, few interventions have included racial and ethnic minority families and few
researchers have developed and tested culturally competent interventions specifically
for these populations. Because Latinos represent the largest racial/ethnic population, they
International Review of Research in Developmental Disabilities, Volume 47 #2014 Elsevier Inc.
ISSN 2211-6095 All rights reserved.
http://dx.doi.org/10.1016/B978-0-12-800278-0.00002-6
39
Author's personal copy

also represent a large proportion of children with IDD and their families. We provide back-
ground on parent and family interventions, and those developed for use with Latino fam-
ilies. We then describe the use of the promotora de salud model as a culturally competent
intervention mode for Latino families of children with IDD. We describe two parent train-
ing programs that used this mode, the results of their evaluation studies, and discuss les-
sons learned in the context using of a community-based research approach. Lastly, we
explore the question of why promotoras were successful in promoting change among
mothers of children with IDD by analyzing focus-group data across projects. Our findings
suggest thatrole modeling and the collaborative style promotoras used in providing edu-
cation promoted change among participants. In conclusion, more interventions are
needed to serve Latino children with IDD and their families. The promotora de salud
model holds promise as a mode of intervention delivery for these families.
1. INTRODUCTION
1.1. Parenting Children with IDD
Approximately, 19.8% of children in the United States between the ages
of 0 and 17 have a special health care need according to the 2011/2012
National Survey of Children’s Health (Child & Adolescent Health
Measurement Initiative, 2013). These data show that about 31% of those
with special health care needs have a developmental delay or disability
including intellectual disability (ID), autism spectrum disorders (ASDs),
cerebral palsy, or epilepsy. Caring for a child with intellectual and devel-
opmental disabilities (IDDs) can be rewarding but can also be stressful as it
presents parenting challenges that families may not have been prepared
for. Disability studies scholars and self-advocates argue that these challenges
are not necessarily caused by the child and his or her disability, but by the
lack of recognition by society that providing supports to individuals who
need them should be a normal part of daily community life (Berger, 2013;
Dybwad & Bersani, 1996). Because having a child with a disability is
socially constructed as a nonnormative experience, the child and their fam-
ilies may face stigma and isolation. In addition, it often becomes a lifetime
odyssey for parents to learn about their child’s disability and how to best
accommodate him or her, and how and where to access services and sup-
ports that may help their child function as full members of society.
In this context, mothers caring for a child with IDD confront a variety
of stressors associated with the caregiver role. These challenges include
experiencing difficulties in obtaining a timely diagnosis, altering aspirations
for the child’s future, dedicating considerable time to the child’s treatment
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and therapeutic programming, and contending with the daily physical and e mo-
tional strain of caregiving (Bailey, Skinner, Rodriguez, Gut, & Correa, 1999;
Paster, Brandwein, & Walsh, 2009). Research has shown that one of the factors
that most contributes to stress among caregivers of children with IDD is prob-
lem child behaviors (Lee, 2013). Children with developmental disabilities are
reported to be at an increased risk for developing a number of psychological
problems including disruptive behaviors (Sofronoff, Jahnel, & Sanders,
2011). Problem behaviors can develop among children with IDD for a number
of reasons, and probably the most frequent one is difficulties with communica-
tion (McClintock, Hall, & Oliver, 2003). Many young children with IDD have
a delay in language development and those with expressive and receptive lan-
guage abilities may have challenges with social communication (Brady,
Marquis, Fleming, & McLean, 2004; McCabe & Meller, 2004). This can lead
to frustration and challenging behaviors among these children which can be dis-
ruptive to family life. Parents may experience these behaviors as even more
stressful because of societal expectations for how children should behave and
the assumption that parents alone are responsible for their child’s behaviors
(Ray, 2002). Challenging behaviors have been found to negatively impact par-
ent–child interactions (McDiarmid & Bagner, 2005), maternal physical health
(Eisenhower, Baker, & Blacher, 2009), depression, anxiety (Gray et al., 2011),
stress (Estesetal.,2009), sleeping patterns (Lee, 2013), and marital adjustment
(Baker, Blacher, & Olsson, 2005) among families raising children with IDD.
Many of these families also report significant financial problems (Brandon,
2007; Emerson, 2003) largely impacted by out of pocket costs of services for
their children (Browne et al., 2012), which can add to stress experienced by par-
ents. To address the complexity of needs that children with IDD and their fam-
ilies have, interventions that involve parents and children with IDD are needed
to provide support that enables parents and children to be part of community life
(Jones & Passey, 2004; Rhodes, 2003). Although a number of family inclusive
interventions have been developed, very few of them have included racial and
ethnic minority families in their development, evaluation, or implementation.
For instance, there are very few interventions that have included or have been
especially developed for Latino families who represent the largest and fastest
growing racial/ethnic group in the United States.
1.2. Research on Latino Families of Children with IDD
Between the 2000 and 2010 census, the Latino population grew by 43% and
encompassed more than half of the total population growth in the United
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States (U.S. Census, 2010). More than 50 million Latinos reside in the
United States, with the Mexican origin population comprising 31.8 million,
followed by Puerto Ricans (4.6 million), Cubans (1.8 million), and those of
all other Hispanic origin (12.3 million). Latino children comprise 23.1% of
children 17 years of age and younger. Although the percent of Latinos in the
United States has risen dramatically, recent research indicates that the num-
ber of Latino children with developmental disability and autism may be
underestimated (Chaidez, Hansen, & Hertz-Picciotto, 2012). According
to Chaidez et al. the underestimation is a result of limited access to health
care, test bias, and differential caregiver expectations for children’s behavior.
Latino children who are diagnosed with an IDD continue to have lower
access, utilization, and quality of health care compared to white children
(Cohen, 2013; Liptak et al., 2008; Parish, Magan
˜a, Rose, Timberlake, &
Swaine, 2012). Latino families involved in early intervention (birth to three)
programs have limited access to care and lower levels of satisfaction with ser-
vices (Bailey et al., 1999). Service barriers for Latino children and families
involved with early intervention systems of care include finances, linguistic
and communication difficulties, and cultural incongruence between families
and providers (Denney, Itkonen, & Okamoto, 2007). Multiple studies have
found Latino families are in need of more information about their child’s
health and access to services (Cohen, 2013; Iland, Weiner, & Murawski,
2012; Magan
˜a, Lopez, Aguinaga, & Morton, 2013; Rivers & Patino,
2006). These findings indicate a need to improve outreach and service deliv-
ery to Latino families of children with intellectual or developmental
disabilities.
Caregiver stressors discussed earlier may be compounded for Latina
mothers who are more likely to be immigrants, and often confront socio-
economic and language barriers compared to non-Latina White (NLW)
mothers, which can contribute to more health problems and fewer available
health resources (Magan
˜a, Seltzer, & Krauss, 2004). Latina mothers of chil-
dren with IDD have been found to have greater levels of depressive symp-
toms and more physical health problems compared to Latina mothers of
children without IDD and NLW mothers of children with IDD (Blacher
& McIntyre, 2006; Blacher, Lopez, Shapiro, & Fusco, 1997; Magan
˜a
et al., 2004; Magan
˜a & Smith, 2006a).
On the other hand, it should be noted that Latina mothers have reported
higher levels of positive impact with respect to parenting a child with IDD
compared to NLW mothers (Blacher & Baker, 2007; Blacher, Begum,
Marcoulides, & Baker, 2013). Similarly, Latina mothers of adolescents
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and adults with autism have been found to have higher levels of positive
well-being than NLW mothers (Magan
˜a & Smith, 2006b). These findings
demonstrate that raising a child with IDD can also be rewarding for Latina
mothers and that negative outcomes are not always the polar opposite of
positive outcomes. In addition to having a positive perspective on their child
with IDD, Latina mothers also value their role as maternal caregiver and the
role of the family (Durand, 2010). Interventions that build on strengths in
Latino families while mitigating negative effects are needed. The values
described above need to be incorporated into interventions that address
the health needs of Latina maternal caregivers and the information and ser-
vice needs of their children.
2. BACKGROUND
2.1. Interventions for Parents and Families of Children
with IDD
To develop functional skills, manage challenging behaviors, and improve
language development and social communication skills, children with intel-
lectual or developmental disabilities need intervention and support. Appro-
priate intervention includes strategies that are matched to the individual’s
developmental level and teach functional skills (Gavidia-Payne &
Hudson, 2002; Kaiser, Hancock, & Nietfeld, 2000). Interventions often
include direct therapy provided to the child and do not always involve
the parents and family. Several researchers have highlighted the need for par-
ent inclusion in interventions for children with a range of intellectual or
developmental disabilities ( Jones & Passey, 2004; Kaiser et al., 2000;
Rhodes, 2003; Singer, Ethridge, & Aldana, 2007). Jones and Passey
(2004) stressed the need for services to include teaching parents behavioral
support strategies and parent support to develop their competence and effec-
tiveness raising a child with IDD. Kaiser et al. (2000) emphasized the critical
role of parents in their child’s naturalistic environment, capacity to be
involved in language interventions for children with IDD, and the positive
impact on children’s language development. Rhodes (2003) emphasized
that behavioral intervention by itself is not sufficient to ameliorate the tran-
sitions families experience in raising children with developmental disabil-
ities. Rhodes suggested an integrative approach blending behavioral and
family systems approaches. A meta-analysis by Singer et al. (2007) on the
efficacy of parent interventions for those raising children with IDD found
that interventions that were inclusive of parent well-being components
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and behavioral parent training were more effective than interventions using
only one component. It is alarming that despite the need for such support, it
is estimated that only 35.5% of parents of children with a disability receive
parenting advice (Douma, Dekker, & Koot, 2006).
2.1.1 Interventions Designed to Reduce Problem Behaviors
Behavioral problems among children with IDDs have been the target of
intervention for many years. However, early work in this arena focused
on the affected child with little or no inclusion of the family system
(Gavidia-Payne & Hudson, 2002). Interventions were primarily located
in clinical settings with little opportunity to work on generalizing behavior
management to the everyday lives of children and families. Given these lim-
itations, family interventions and studies that include parent and families
were initiated. Interventions that include parents or families have taken
the form of parent education programs, parent meditated interventions,
and behavioral family interventions (BFIs). The goals of family involved
interventions with respect to behavior management are to increase parent
capacity to manage their child’s behavior and reduce adverse behaviors in
children with IDD. According to Sofronoff et al. (2011), additional target
outcomes of tailored parent interventions and support include reductions
in caregiver burden and improvement in parenting competence. BFI
stress underlying family factors that may contribute to the behavioral diffi-
culties in children with developmental disabilities. Finding that the
method was successful to prevent behavior problems, Sanders (1992)
emphasized the need to bring interventions into the homes of children
and families. More recently, BFI used in families of children with IDD
has been shown to improve child behavior (Feinfield & Baker, 2004), reduce
maternal stress (Roberts, Mazzucchelli, & Studman, 2006), as well as
enhance parental self-efficacy and modify parenting attitudes and behaviors
(Gross et al., 2003; Roberts et al., 2006). These results further identify the
utility and efficacy of parent or family involved interventions for children
with IDDs.
Several recent studies have explored the efficacy of parent education pro-
grams and have found positive effects on children’s behavior and family out-
comes (Sofronoff et al., 2011; Tellegen & Sanders, 2012, 2013). One such
program is the Stepping Stones Triple P program which provides seminars on
parenting strategies to improve behavior. In a randomized controlled trial,
Sofronoff et al. (2011) evaluated the efficacy of the brief group intervention
for parents of children with a disability. Two seminars about strategies to
44 Sandra Magaña et al.
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improve child behavior and parenting factors associated with the develop-
ment and maintenance of child behavior problems were presented. Children
of parents in the intervention group had significant reductions in behavior
problems and their parents were found to use less dysfunctional parenting
styles and reported less parental conflict compared to the waitlist group. This
study and others on Triple P illustrate that parent seminars are effective in
teaching parent behaviors to improve their child’s behavior problems
(Nowak & Heinrichs, 2008).
Similar to Triple P is a program called Signposts for Building Better Behavior,
a manualized intervention including videotape models and worksheets for
families of children who have intellectual disability and challenging behav-
ior. The program includes advice for teaching skills to children with intel-
lectual disability, using planned activity routines, and managing challenging
behaviors using a functional assessment approach. Parents are also given
advice about stress management and general problem-solving. Hudson
et al. (2003) expanded the application of Signposts to three modes of imple-
mentation: self-directed, telephone-support mode, and group-delivery
mode. One hundred fifteen families of children who had ID and challenging
behavior were semirandomized into three intervention groups and a control
group. Families consisted of mother–child dyads and children were between
5 and 20 years old. Mothers in each of the intervention groups were more
confident in their ability as a parent, less stressed, and had fewer hassles with
regard to their needs as parents postintervention. Reductions in child disrup-
tive and antisocial behaviors were also found. The study suggests that the
manualized intervention program can be successful with parents of children
with ID and that innovations in intervention delivery are viable. Relevant to
the current study is the fact that neither the Triple P program nor Signposts
has been applied with Latino families.
2.1.2 Interventions Designed to Improve Language Development
Children with IDD are often faced with challenges in their language devel-
opment, and as noted earlier, communication problems among children can
lead to problem behaviors. As with behavioral interventions, it has been
shown that parent implementation of language interventions is as efficacious
as interventions provided by clinical professionals (Law, Garrett, & Nye,
2004). Roberts and Kaiser (2011) conducted a meta-analysis of the effective-
ness of parent-implemented intervention among children with language
impairments. The meta-analysis included 18 peer-reviewed studies on
parent-implemented interventions for children between 18 and 60 months
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with primary and secondary language impairments. The interventions
included in the analysis were Child Talk,Hanen Parent Program,Heidelberg
Parent-Based Language Intervention,Social Pragmatic Joint Attention,Focused
Stimulation, and those labeled as parent-based intervention. The populations
of children included in the studies were children with developmental dis-
abilities (DDs), Down syndrome, language impairment, and ASD.
Parent-implemented interventions were revealed to have a significant, pos-
itive impact on receptive and expressive language skills of children with and
without intellectual disabilities (Roberts & Kaiser, 2011). While these find-
ings are positive, only 22% of the 18 studies reported the inclusion of families
from racial/ethnic minority groups. Seventy-eight percent of them did not
report any information about minority group status. Another defining fea-
ture about the populations served in the 18 studies was the limited socioeco-
nomic status of participants.
The meta-analysis conducted by Roberts and Kaiser (2011) and other
empirical studies indicate that parent-implemented interventions targeting
language development among children with and without intellectual impair-
ment are valuable for child and family outcomes (Kaiser et al., 2000; Law et al.,
2004; McConachie & Diggle, 2007). However, across the research on parent
and family involved interventions, there is a dearth of information about the
efficacy of interventions with children and families from diverse racial/ethnic
or sociodemographic backgrounds, including Latinos. It is critical to specifi-
cally target and recruit children and families from diverse ethnic and
sociodemographic backgrounds for inclusion in research on IDDs to identify
intervention methods that meet their needs and circumstances.
2.1.3 Parent-to-Parent Programs
Several studies have indicated that parents are in need of information and
support as they experience the myriad of challenges associated with raising
children with IDD. Since the 1970s, parent-to-parent programs have been
developed to provide an environment of support as well as enhance parent
self-efficacy (Robbins et al., 2008). For parents of children with disabilities,
the parent-to-parent programs developed out of the grassroots self-help
movement in the 1980s (Santelli, Turnbull, Marquis, & Lerner, 1995).
In an early study, 24 parents of children with a DD across five states were
assigned to either a treatment group (2 months of a parent-to-parent
program) or a waiting list comparison group (Ainbinder et al., 1998). Post-
intervention data indicated significant increases in coping, attitude, and
progress on addressing problems among parents in the treatment group.
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Ainbinder et al. (1998) illustrated key aspects of the parent-to-parent
program that participants indicated were essential to designate the veteran
parents as a “reliable ally” (p. 103). The components include perceived
sameness, comparable situations for learning relevant skills and gathering
useful information, availability of support, and mutuality of support. In
addition to illustrating the utility of parent-to-parent programs, this study
extended the programs to underserved populations. Forty-three percent
of families in the study had incomes below $15,000–25,000. Eleven percent
of families were African American. Overall, the Ainbinder et al. (1998) study
found positive outcomes for parents and suggests that parent-to-parent pro-
grams are advantageous among traditionally underserved populations.
In their meta-analysis of 29 studies of parent-to-parent programs, Robbins
et al. demonstrated the effectiveness of parent-to-parent support programs and
explored the concepts, constructs, and key elements of the programs that
should be considered when designing a parent-to-parent program. Robbins
et al. (2008) indicated that parent-to-parent programs involve pairing of par-
ents coping with children with a variety of mental health and chronic illness
concerns and parents who have shared a similar experience who offer support,
otherwise referred to as veteran parents. Parent-to-parent programs have been
linked to improvements in self-efficacy through a focus on prior successful
experiences, vicarious experiences, verbal persuasion, and physiological and
affective states (Robbins et al., 2008). Limitations are that the type of support,
structure, and determination of criteria for veteran parents were inconsistent
across studies. Similar to other studies (Singer et al., 1999), Robbins et al.
(2008) concluded that empirical work on parent-to-parent programs remains
in a nascent period with several inconsistencies in the description of programs,
driving factors, processes, and outcomes. Despite these methodological flaws
and limited populations studied, the studies all reported high levels of parent
satisfaction and improved coping skills.
The interventions we developed for Latino families reported later in this
chapter build on the tradition of peer-led programs in IDD by outlining a
peer-led model of intervention called promotora de salud. We will describe
the promotora de salud model after we present the limited work that has been
done on developing interventions for Latino families of children with IDD.
2.2. Interventions for Latino Parents and Families of Children
with IDD
In this section, we discuss the need for interventions targeted to Latino fam-
ilies of children with IDD and then discuss the very limited literature on
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interventions specifically targeted for this population. It should be noted that
we only found four studies that described an intervention for Latino children
who had or were at risk for developmental delay.
Latino children with and without disabilities and their families are a rapidly
growing population facing various challenges including poverty, language
barriers, limited education, and restricted access to health care (Alegria
et al., 2007). These factors impact service access and utilization as well as child
outcomes among Latino children including those with IDDs. According to
Cohen (2013), immigrant families are limited in their service access resulting
from their lack of familiarity with the special education and social service sys-
tems that add to the multifaceted barriers of language, poverty, and discrim-
ination. Similar findings have been reported in other work pertaining Latinos
with autism (Iland et al., 2012; Liptak et al., 2008; Parish et al., 2012). Magan
˜a
et al. (2013) also found that knowledge about autism contributed to the num-
ber of services their children received. These studies suggest that Latino par-
ents have limited knowledge about developmental disabilities and available
services as well as reduced social support. Those who are limited in English
proficiency have added constraints on their ability to access information
and supports. Thus,interventions designed for use with Latino families should
be offered in their language of preference and include strategies to enhance
their knowledge about disability, services, and social support.
Latino families are clearly in need of more focused information about
children and IDD and greater quality of relevant services starting early in
the child’s life. Despite the requirement for early interventions services to
be culturally component and inclusive of the family, the available interven-
tions are not culturally informed to meet the distinct needs of Latino immi-
grant families (Denney et al., 2007; Garcia, Mendez-Perez, & Ortiz, 2000;
Withrow, 2008). According to Withrow (2008), awareness of self; the abil-
ity to collect specific knowledge about a family’s community; assessment of
the family’s acculturative status; and assessment of beliefs and attitudes about
child rearing, disability, and treatment are imperative for any intervention to
be aligned with culturally competent practice. Denney et al. (2007)
suggested that it is equally critical to explore interagency collaborations that
engage in outreach and service delivery to support the needs of Latino fam-
ilies of children with IDD as it is to develop culturally competent interven-
tions that are grounded in research about the Latino population. Moreover,
culturally adapted interventions for Latinos families of children with IDD are
suggested to have the potential to increase parenting self-efficacy and lessen
caregiving burden (Magan
˜a, 2011).
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As stated at the beginning of this section, we were only able to find four
studies pertaining to Latino children with IDD. The first study (Bruder,
Anderson, Schutz, & Caldera, 1991) explored the efficacy of the Nin
˜os
Especiales Program (NEP), a home based, culturally sensitive model of early
intervention for families of Puerto Rican heritage with an infant with severe
disabilities. The five key elements in NEP are family orientation, cultural
sensitivity, interagency coordination, transdisciplinary services, and transi-
tion. Cultural sensitivity included (1) focusing goals on the family and their
normal routines; (2) incorporating cultural roles and norms of Puerto
Ricans; (3) including health-related beliefs among Puerto Ricans; and (4)
provision of materials and the services in the family’s preferred language
(Spanish or English). Parents of 15 infants who received NEP for a minimum
of 18 months indicated a lower number of identified needs after 1 year in the
program. A case study about the family of a 12-month-old boy diagnosed
with lower thoracic-level myelomeningocele and associated developmental
delays found that 5 months of NEP increased the parents’ confidence in car-
ing for their child and increased access to services for the child as well as
government assistance programs to fill needs associated with sociodemo-
graphics. The long-term affects of the program were the child’s functional
improvements, parents’ abilities to advocate for their child, and the mother’s
involvement in other interventions the child received. However, limited
details about how the influence of the cultural adaptations affected the inter-
vention’s success were provided in the paper.
The second study (Lequerica, 1995) centered on a program specific to
52 low-income Latino preschoolers at risk for developmental delays served
by an urban pediatric clinic. The program provided linkages among hospital,
educational, and developmental settings to overcome barriers faced by
Latino families in care coordination. Culturally sensitive methods of referral,
including the use of bilingual providers were also utilized. The program did
not provide direct services, thus the full impact of the program on children
and families beyond receipt of a referral and/or diagnosis is unclear. The
researcher further suggested the need for follow-up care and culturally
informed interventions to meet the needs of families.
Santarelli, Koegel, Casas, and Kern Koegel (2001) provided a case study
of a 6-year-old Latino male diagnosed with ASD who displayed language
delays and severe behavior problems. The family was involved with a parent
education program to educate the parents about their child’s disability and
strategies to manage problem behaviors. Due to multiple socioeconomic and
cultural barriers that existed for the family, adaptations were made to the
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original plan of care. The alterations included the provision of services in
Spanish, revisions of the intervention manual to fit the family’s educational
levels and, verbally described in detail, home sessions during the father’s
(head of household) nonworking hours, and inclusion of other family mem-
bers living in the household to ensure accessibility of the intervention and to
incorporate the Latino value of the importance of family. These adaptations
facilitated the family’s full involvement in the parent education program.
The findings were restricted to a coincidental meeting of one of the
researchers with the family in the community. The child did not display
any behavior problems and the mother’s reports indicated that the program
helped to reduce the child’s behavior problems over the past few months
since completion.
The fourth study (Kummerer, 2012) presented components for
implementing collaborative, family-centered language intervention with
Hispanic parents and their children with communication disabilities. The
strategies were derived from a case study of the Garcia family, a family of
four with a concern regarding Jose (2.9 years old), newly diagnosed with
a language delay. The paper explores the components and lessons learned
with the Garcia through their relationship with a speech–language pathol-
ogist. Lessons learned included the importance of bilingual and bicultural
providers, clinical consultation and research to understand disability within
the social context of families, support of family efforts, and cultural self-
scrutiny. Similar to the work of Bruder et al. (1991), Lequerica (1995),
and Santarelli et al. (2001), this study illustrated the efficacy of a culturally
adapted model of intervention for Latino families of children with disabil-
ities. Moreover, the implications of the four studies mimic several national
studies about Latino family needs. However, the research designs are not
specifically outlined and findings are often limited to case studies.
Interventions with other populations of Latino children and families that
included cultural adaptations have been found to reduce parenting stress
(Borrego, Anhalt, Terao, Vargas, & Urquiza, 2006) and improve parenting
practices (Matos, Torres, Santiago, Jurado, & Rodriguez, 2006). For exam-
ple, Martinez and Eddy (2005) designed Nuestras Familias: Andando Entre
Culturas (Our Families: Moving Between Cultures), a parent management train-
ing for Spanish-speaking Latino families of middle school aged youth at risk
for behavioral problems. Five Latino family interventionists from the com-
munity, project staff, and community experts adapted a previously used par-
ent management training model to develop Nuestra Families. The
adaptation required careful review of Latino family cases, review of literature
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pertaining to the needs of Latino families, and focus groups with Latino fam-
ilies to determine the fit and feasibility of the adapted intervention. The
intervention incorporated culturally specific adaptations such as bilingual
Latino staff and culturally relevant topics (i.e., strong Latino roots, multiple
family roles). Seventy-three Latino families were then recruited and ran-
domized into the intervention or a control group. The intervention was
administered at the Oregon Social Learning Center in 12 weekly group ses-
sions, with 12–15 parents per group. Improvements in parents’ overall effec-
tive parenting and decreases in the likelihood of youth using substances,
aggression, and other externalizing behaviors were found. The study dem-
onstrated the efficacy of culturally informed methods among Latinos, yet is
limited to middle school youth with behavior concerns.
Given the number of Latino children with IDD and the impact on fam-
ilies, it is critical for researchers and practitioners to explore the development
and implementation of culturally competent interventions among this pop-
ulation to determine how to include and retain them in research, enhance
their access and utilization of services, and improve child and family out-
comes. The studies reviewed provide a foundation for the development
of culturally informed interventions for Latino families yet are limited in
scope and details. The next section outlines a public health model that
has been applied to prevention and interventions in the public health arena
with Latinos. The promotora de salud model offers a mode of intervention
for families of children with IDD that is culturally based and sensitive to the
needs of this group of parents. It has the potential to build on the parent-to-
parent programs developed for families of children with IDD in a manner
that can reach underserved families.
2.3. Borrowing a Model from Public Health: Promotoras
de Salud
The promotora model is a community collaborative approach that includes
the use of community health workers to inform and deliver culturally
informed intervention services (Rhodes, Foley, Zometa, & Bloom, 2007;
Stacciarini et al., 2012). A promotora is a lay health educator or peer leader
who is indigenous to the Latino community and completes training in the
provision of health education and encourages behavioral changes among
community members (Otiniano, Carroll-Scott, Toy, & Wallace, 2012).
Promotoras have engaged in multiple aspects of health care and service
delivery including outreach, screening, and health education, served as
members of care delivery teams and as health care navigators (Otiniano
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et al., 2012). The trusted relationship promotoras within the Latino commu-
nity have enabled them to gain access to low income and immigrant families
(Nemcek & Sabatier, 2003). The promotora model has been found to pos-
itively influence the recruitment of Latino participants in intervention work
as well as to serve as a driving factor to improve health education and out-
comes among Latinos (Otiniano et al., 2012; Twombly, Holtz, & Stringer,
2012; WesRasmus, Pineda-Reyes, Tamez, & Westfall, 2012).
With respect to Latino child health and behavior outcomes, the
promotora model has been demonstrated to inform parents about child
health, modify parent behaviors to enhance child health, and reduce child
behavior challenges (Ayala et al., 2010; Rhodes et al., 2007; Williamson,
Knox, Guerra, & Williams, 2014). The promotora model was recently used
in a pilot randomized trial targeting child behavior problems in Latino immi-
grant families (Williamson et al., 2014). In their study, Williamson et al.
(2014) trained promotoras to deliver the Madres a Madres program, a
four-session intervention program focused on information about child
development, parent–child interaction, behavior management strategies,
and community resource service navigation, to 113 Latino immigrant
mothers. All sessions were conducted in the home of the families. From pre-
test to posttest, the results of the study illustrated increases in parenting skills,
family support, and family organization, as well as reductions in child inter-
nalizing behavior among the intervention group. This study emphasizes the
effectiveness of the promotora model among Latina immigrant mothers of
children with behavioral challenges.
The literature indicates that promotoras are effective at intervention
delivery and provision of support for Latino families. In the next section,
this chapter widens the scope of the promotora model by highlighting
the use of promotoras in the delivery of a culturally competent model of
intervention to Latino immigrant mothers of children with IDDs.
3. USING PROMOTORAS DE SALUD TO DELIVER FAMILY
INTERVENTIONS TO LATINO FAMILIES
In this section, we provide a description of two projects we developed
using the promotora de salud model framed within the context of
community-based research. Through the process of developing these inter-
ventions, we found it was important to use a community-based approach
because of the community-oriented nature of the promotora model.
Community-based participatory research (CBPR) is a dynamic process
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where community and academic partners work together to improve the
health of community members. This model is characterized by a
partnership-driven approach to community change that fosters empower-
ment, equity, respect, and shared responsibility among all members of the
research team. CBPR also builds on local strengths and resources in pursuit
of community improvement and well-being. Through active collaborations
and shared expertise, researchers and community members work to achieve
greater knowledge of a given phenomenon, which benefits the health and
well-being of involved communities (Israel, Schulz, Parker, & Becker,
2001). The CBPR literature outlines a well-established list of core values
essential to this approach, such as incorporating knowledge and experiences
of each partner for the benefit of all parties and fostering a process that is
empowering (Israel, Schulz, Parker, & Becker, 1998), as well as an inventory
of the ways in which community partners have been involved throughout
the research process (Butterfoss, 2006).
There is a continuum of participation whereby community partners may
provide limited consultation all the way through full collaboration through-
out the research process (Minkler & Salvatore, 2012). As “inside experts” in
the culture of their communities, community partners play a crucial role in
developing and implementing successful programs ( Jones et al., 2010). As
such, partnerships that value and take actions to incorporate the input of
all community partners input benefit from a research process and product
that is culturally relevant and meaningful to the priority population.
CBPR has deep roots in the work of Brazilian educator Paulo Freire who
was best known for his book Pedagogy of the Oppressed (1970). This seminal
work has influenced the ways in which researchers and historically
“oppressed” communities come together to address social change bychalleng-
ing the assumption that academic researchers are in sole control of the research
agenda (Hegar, 2012). In the 1960s and 1970s, participatory research was
commonly used with indigenous communities in Latin America and con-
tinues to be used with Latinos in the United States and abroad.
Themes from Freire’s work stress the importance of individuals and
communities identifying their own problems and the solutions they believe
are most appropriate (Ferreira & Gendron, 2011). This is because Freire
believed that people are highly capable of naming their own realities and
of making decisions for themselves. He also understood that communities
are experts in their own needs, values, and realities and proposed that every-
one involved in an educational or research process participates as colearners,
sharing knowledge and power to make collective decisions (D’Alonzo,
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2012). The extent to which we engaged in community-based research
developed and increased overtime through a process of trial and error.
Therefore, we will summarize lessons learned with respect to conducting
community-based research and in the use of the promotora model.
3.1. Description of Our Projects
3.1.1 Project 1: By Caring for Myself, I Can Better Care for My Family
To address poor health among Latina mothers of children with IDD, we
began work on our first culturally sensitive health education intervention
in 2006. The goal of the intervention was to help Latina mothers focus
on their own health care needs, which is often overlooked by caregivers
who are tending to the needs of their children. The intervention was
designed to be delivered by promotoras through eight home visits. The
home-visit aspect of the study was important to address several barriers these
mothers faced such as the many caregiving demands on their time, childcare,
and transportation. The criteria to be a promotora included being from the
Latino community we would be serving (culturally and geographically), a
native Spanish speaker, and having a child with IDD. This latter criterion
was important in order to ensure that the promotoras understood not only
the cultural context but also the experience of raising a child with IDD and is
consistent with the parent-to-parent programs discussed earlier. In 2007, we
pilot-tested the first iteration of our study as a single group design in a mid-
sized city in the Midwestern region of the United States. After developing a
curriculum in Spanish and English with consultation from Latino commu-
nity members, we provided extensive training to the promotoras in the cur-
riculum and the conduct of home visits. This iteration was on the lower end
of the continuum of community-based research since we mainly involved
the community for consultation but not as research partners. The curricu-
lum included eight sessions with the following topics: (1) importance of tak-
ing care of yourself, (2) health care for you, (3) example well-being activities,
(4) nutrition, (5) exercise, (6) reducing stress and recognizing depression, (7)
including others, and (8) personal growth. The manual content for each of
the topics takes into account the cultural and disability context. For example,
the session about exercise begins with a discussion of how participants
exercised in their country of origin (if they were immigrants), or growing
up. Many immigrants from Latin America spent time walking, often because
they did not have cars, and walking is a normal way to get from place to
place, particularly in smaller villages. However, in the United States, they
discovered that it can be difficult to function without a car, and some
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neighborhoods where participants live may not be considered safe. Addi-
tionally, in the Midwest, it is much colder than most Latin American cities,
and participant who are immigrants are skeptical about walking in cold
weather. These topics are explored with participants and ways that they
can increase their movement are discussed, including ways to engage in
physical activities with their child with IDD.
Once trained in the curriculum, promotoras conducted weekly home
visits, administered pre- and posttests, and provided support to participants.
In this study, we did not have a formal community partner, instead we
worked with key individuals in the local Latino community to help revise
our materials and to recruit promotoras and participants.
The second iteration of the project was piloted in a larger Midwestern
city in 2008. This time we had a more formal community partner who hel-
ped us with recruitment of promotoras and participants, as well as provided
us with space to offer trainings and activities. This was a newly established
community-based organization (CBO) that served Latino children and
adults with IDD. We found that while we shared target populations with
this CBO, we did not have a set of shared goals with the leaders of this orga-
nization. For example, they were more focused on serving the children and
adults with IDD directly, and not as much with serving the parental care-
givers. Additionally, given that they were a new struggling CBO, they were
interested in working with programs that would bring in funding to sustain
the organization and we only had minimal funding for this project. While
participant findings from this study were positive and statistically significant
(Magan
˜a, 2011), challenges with regard to recruitment and implementation
were more pronounced than they were in later iterations of the project
where CBO shared goals for the program. We believe that the challenges
that we confronted in this partnership may have been because of the mis-
match of priorities between the CBO and the research team, and our limited
funding which did not allow us to compensate the CBO in a way they
would have liked.
Despite some challenges in implementing the first two pilot studies, our
findings indicated that mothers’ mental health, self-efficacy, and health
behaviors had improved over the course of participating in the program
(Magan
˜a, 2011). Thus, we decided to test the intervention in a large city
in the Midwest, this time using a randomized control study design in which
participants were randomized into two groups. Participants in one group
received the program immediately and participants in the other were placed
on a waiting list and received the curriculum manual used in the program.
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For this iteration of the study, we partnered with a CBO that was well
established and served Latinos with IDD and their families. In this partner-
ship, we shared goals with the CBO from the start, which is an essential prin-
ciple of Freire’s work (Freire, 1970). The CBO at the time was facing budget
cuts in some of the family programs they offered as a result of the economic
downturn. The CBO staff was enthusiastic about participating in the project
because they historically provided services to family caregivers of children
with IDD and saw our project as a way to expand their offerings. Therefore,
we had shared goals with the CBO from the start. Although the intervention
protocol and procedures were already established in previous iterations, the
promotoras recruited through the CBO provided feedback to improve the
protocol during the training sessions. Additionally, we were able to budget
adequate funding for the participation of the CBO in the research grant for
this project.
The study design for this iteration included 100 participants randomized
into the two groups and seven promotoras that we trained. All participants
were given a baseline questionnaire before they were randomized. Both
intervention and waiting list groups received follow-up questionnaires 3,
6, and 12 months from baseline. The assessment included the following
measures: (1) self-efficacy in healthy behaviors, (2) positive health behaviors,
(3) depressive symptoms, and (4) caregiver burden. An analysis of the base-
line and 3-month follow-up assessment found significant differences in self-
efficacy in healthy behaviors and in self-reported positive health behaviors,
suggesting that the intervention is efficacious in improving these outcomes
(Magan
˜a, Li, Miranda, & Paradiso de Sayu, 2014). We found that both
groups reported reduced depressive symptoms and burden, indicating that
we cannot be sure that the intervention alone is responsible for these reduc-
tions. Interestingly, the majority of the 50 participants on the waiting list
engaged in the program when it was offered to them demonstrating the need
for such a program.
3.1.2 Project 2: Parents Taking Action
Our second project was specifically tailored to the needs of Latina mothers
caring for a young child with autism. Latina mothers of children with autism
are faced with multiple challenges including a language barrier and a lack of
information about autism to share with their families (Iland et al., 2012;
Magan
˜a et al., 2013). As such, the purpose of the program was to increase
mothers’ knowledge of child development, autism, how to share informa-
tion with family members, how to advocate for services for their child, and
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how to use evidenced-based strategies in their homes to reduce challenging
behaviors. Of all of our projects, this one had the most community partic-
ipation from the onset. We partnered with a well-established CBO that is
immersed in the autism and Latino communities and sponsored a support
group for Spanish-speaking families of children with ASD. In fact, the idea
of developing a curriculum for Latino parents of children with ASD using
the promotora model came from one of the CBO leaders after learning
about the Caring for Myself project. We began looking for funding oppor-
tunities and we received a grant from the UW-Madison Institute for Clinical
and Translational Research which allowed us to subcontract funds to the
CBO so they could carry out their part of the project. Early on, a commu-
nity advisory board (CAB) was created to give input and direction to the
project. The CAB was comprised of Latino parents of children with
ASD, a bilingual pediatrician and a social worker, CBO staff members,
and a research staff. The CAB helped to shape the content and ensure it
was culturally appropriate. We created two educational modules consisting
of eight sessions each. The content for the first module included (1) intro-
duction to the program; (2) understanding the development of social skills,
play skills, and communication in young children; (3) recognizing the signs
and symptoms of ASD, dispelling myths, and understanding the meaning of
diagnostic criteria for ASD; (4) learning where to go and how to advocate for
diagnosis, supports, and community services; (5) learning how to advocate
for your child in the school system; (6) explaining autism and your child’s
behavior to others and building social support; (7) taking care of yourself
(reducing stress and recognizing signs of depression); and (8) sustaining
growth and learning. Three promotoras who were Latina mothers of chil-
dren with ASD were trained in the curriculum and conducted 8 home visits
with 19 participants. Participants received a pre- and posttest, and we found
that participants improved significantly in family empowerment oriented
outcomes such as understanding their child’s needs, knowing their rights,
and advocating for their child. The content for the second module included
(1) introduction and overview; (2) learning about research-based interven-
tions for children with ASD; (3) strategies to encourage your child to com-
municate; (4) strategies to improve your child’s play skills; (5) strategies to
improve your child’s social skills; (6) understanding reasons for challenging
behavior; (6) preventing and addressing challenging behavior; and (8)
looking ahead and posttest. Fifteen of the nineteen participants completed
module II and we found that they improved in their confidence in using
the strategies they were taught. We also found that their children improved
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in language and social and self-help skills. Importantly, our community part-
ners were enthusiastic about their participation and the results. Moreover,
the CBO decided they would continue to implement the intervention at
the end of the study. This project was based on a one group design and
we are in the process of conducting a randomized trial of this intervention.
3.2. Lessons Learned About Conducting a Successful
Promotora Project Using CBPR Approaches
Through our experience with community-based work and implementing a
promotora model, there were several lessons we learned that will help us and
perhaps others in similar projects. We learned about both how to conduct a
successful promotora project and how to conduct successful CBPR. The
main lessons related to a successful community-based promotora project
were (1) the importance of a community project coordinator; (2) the impor-
tance of building promotora capacity, (3) the issue of retention of
promotoras, (4) the importance of shared vision and goal, and (5) the issue
of funding.
3.2.1 The Importance of a Community Project Coordinator
In our projects, the academic side of the partnership was comprised of the PI
or Co-PIs, an academic project coordinator, and research staff. The aca-
demic project coordinator was responsible for managing the day-to-day life
of the project on the academic side, keeping other members on the research
team informed of updates and progress, as well as delegating tasks related to
the project. However, a similar role was formally established on the com-
munity side of the project for the third iteration of the Caring for Myself
project and for the Parents Taking Action project. During the first and sec-
ond iterations of the Caring for Myself project, it was the responsibility of the
academic project coordinator to manage the program on both the academic
and community sides of the program. This dual role also included the
responsibility of being in regular contact with the various promotoras and
handling all issues that arose from their work with participants, as well as
budgeting and other administrative tasks.
The third iteration of Caring for Myself was considerably larger than the
previous ones, and the CBO was located about two and a half hours from
our headquarters. It became clear that a designated and compensated indi-
vidual would need to be formally identified on the community side to work
closely with the academic project coordinator to manage the day-to-day life
of the project on the community side, as well as be in close contact with the
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families that participate in our interventions. For this iteration, we allocated
funding to the CBO to hire someone for this position. Our research staff
members believed this person was critical because she had a great relation-
ship with all of the participants, knew the families, and had the skills to inter-
act well with them. Establishing a community coordinator role helped our
partnering CBOs to stay organized and less overwhelmed by the potentially
daunting task of partnering in a research project. It also demonstrated a crit-
ical trust in our community partners to manage the administrative and daily
tasks of the project, which is critical to their empowerment. Because this
approach was successful, we also budgeted for and designated a community
project coordinator for the Parents Taking Action project.
3.2.2 Building Promotora Capacity
Through interaction with our community partners and the promotoras, we
have learned that the quality and capacity of the promotoras that collaborate
in our projects are central to success of the research. We selected promotoras
with the help of the CBOs using the criteria that they be leaders in their
communities in some way (e.g., volunteer with support groups or other sup-
port activities) and be parents of children with IDD or autism (depending on
the project). Promotoras who display a high level of professionalism, expe-
rience, and familiarity with the intervention materials make the work of the
CBOs easier from a management standpoint. In addition, these qualities,
along with their devotion and ownership of the project, are what partici-
pants most often referred to in postintervention focus groups as the highlight
of their experience in the program. We learned over time how to instill this
sense of ownership and professionalism in the project. Some of the ways we
found useful in this regard included ensuring the training sessions were not
merely didactic, but based on dialogue which is consistent with Freire’s
approach to education. We asked the promotoras to give us input during
the trainings which we used to adapt and change the protocol and materials.
We gave the promotoras certificates at the completion of trainings which
gave them a sense of pride. We also met with the promotoras as a group after
they had completed a couple of cases and asked for further input and feed-
back. The interaction they had with each other in these group meetings hel-
ped to promote professionalism as well.
3.2.3 Promotora Retention
Another lesson we learned was how to better retain promotoras and engage
them in training new promotoras. A problem we encountered was that the
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promotoras were very busy with part-time jobs, caring for their children
and families, and continuing with their community leadership roles (after
all we required that they be leaders in their communities and that they have
a child with a disability). While we compensated the promotoras for their
time in our first and second iteration, we were paying them as consultants
through the university. Anyone who works with payroll and compensation
issues at the university level knows how regulated and inefficient this can
be; as a result, it often took a long time for promotoras to receive their
compensation. Subsequently, some of the promotoras had to put their
work with us on the back burner so they could engage in more efficiently
paid work. Our move toward working with CBOs and subcontracting
funds to them helped to resolve this problem as the CBO had more flex-
ibility to pay the promotoras in ways that were more efficient and
inclusive.
Another problem we encountered was that promotoras tended to lose
interest in their role after about 1 year. Delivering the same curriculum over
and over can be monotonous and they often moved on to other activities
within the CBO. One solution to this problem was to implement a train-
the-trainer model in which the original promotoras helped to train a new
group of promotoras who were past recipients of the program. The new
promotoras then continued with the program, allowing the original
promotoras to move on to other activities if they chose. Using this model,
the senior promotoras were empowered to take a leadership role and to
demonstrate their knowledge of the program given their extensive first-
hand experience. We found that the senior promotoras took great pride
in their ability to train others.
3.2.4 Shared Vision and Goals
This is another area we found to be very important in conducting
community-based research. We did not have shared goals with the first
CBO we worked with on the Caring for Myself project. As a result, we
had more challenges with recruitment and engagement of the promotoras
and participants. We did have shared goals with the second CBO we worked
with on Caring for Myself and were able to successfully train 7 promotoras and
conduct the study with 100 participants. Likewise, we had shared goals with
the CBO that worked with us on Parents Taking Action and the recruitment,
retention, and conduct of the study flowed well.
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3.2.5 Funding for CBOs
One of the lessons we learned is that the ability to provide funding to the
CBO is important to the success of the project. Most CBOs are relying
on grants for specific projects they have and are very busy delivering the ser-
vices they provide on an ongoing basis. Therefore, it is unrealistic for inves-
tigators to expect substantial participation if their staff are not being
compensated for their time, or facilities are used without compensation.
Some CBOs may be willing to participate in a study for other tangible items
like an offer to provide staff training on a needed subject, or to provide a
report on an area that they need for fundraising, etc. However, to engage
a CBO on a more substantive basis even if there are shared goals, we learned
it is important to have funding that can be budgeted and allocated to
the CBO.
When we started the Caring for Myself project and were developing and
testing the materials, we had very little funding and were not able to com-
pensate a CBO. As a result, we mainly relied on consultation from commu-
nity members. In our second iteration of this project, we engaged a CBO,
but did not consider their need for funding. While our grant was very small,
when we realized our error, we offered to provide some funding for their
help with outreach and providing space. We took this lesson to our grant
writing for the next projects and were able to budget and obtain adequate
funding for the CBOs we worked with for the third iteration of Caring for
Myself and the Parents Taking Action project. We found that this enhanced
the mutual respect with our collaborators and helped the project go
smoother. Given the complexities that surround accessing resources for
research and then budgeting those resources for a project, it is not surprising
that funding is a primary challenge in CBPR (Israel et al., 2006).
4. HOW DO PROMOTORAS FOSTER CHANGE?
As discussed earlier, there is a growing body of research demonstrating
the effectiveness of the community health worker or promotora model.
However, this research is limited in explaining the potential mechanisms
by which promotoras foster change with their participants. One study con-
ducted qualitative interviews with participants of a promotora project and
found that the quality of the relationship between the promotora and her
participants was an underlying mechanism and that the promotora provided
educational and motivational support (Reinschmidt et al., 2006). There is
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also a limitation in understanding how promotoras view their own role and
whether their participation contributes to their own professional and per-
sonal growth.
The goal of our intervention projects has been to provide education
about a particular topic (e.g., health promotion, autism) to the target pop-
ulation. The purpose of the education is to equip and encourage participants
to take positive action around that target area in a way that will benefit them-
selves and their families. This goal is consistent with Freire’s (1970) theory of
popular education and empowerment which flourished in Latin America
during the 1970s. This theory rests on the belief that through critical dia-
logue, people can reflect on their problems and situation and empower
themselves to change the circumstances that oppressed them. In this sense,
the goal of promotoras is about not only improving health outcomes and
facilitating access to services for underserved populations but an awakening
of critical consciousness. They begin to realize that they have the capacity to
analyze and change their own situation. This awakening of capacity within
themselves enables individuals to take charge of their health—and their lives.
Another way to think about building individual capacity is the idea of self-
efficacy, a theory developed by Bandura (1977). Bandura argued that in
order for individuals to make behavioral changes in their lives, they must
feel confident in their ability to make those changes. Factors that promote
the development of self-efficacy according to Bandura include learning how
others perform activities (vicarious experience), encouragement from others
(verbal persuasion), and successfully engaging in targeted activities (mastery).
In addition, the emotional state of the individual can impact the develop-
ment of self-efficacy.
Consistent with Freire’s theory, we decided to use a peer-led dialogue-
based approach to teaching and learning rather than a didactic approach that
uses a professional who imparts information and facts. Peer-led sessions can
have a greater impact than dominant top-down health educational models
because peers speak the language and have had similar life experiences as
noted in the parent-to-parent projects. The cultural similarity of peer
promotoras helps ensure that the language and messages are relevant and
appropriate. In addition, these similarities can lead to the development of
trust more quickly between promotora and participants. Trust is an impor-
tant element to active engagement of any individual or group. Using dia-
logue and posing questions can be more empowering than taking an
“expert” stance to delivering content. Participants may feel that they are
being heard and understood. They also learn about the experiences of the
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promotoras who become role models for them which is consistent with self-
efficacy theory. These elements can give participants more motivation in
carrying out strategies and actions because they see them as relevant to their
own lives.
In addition to benefits to the participants, promotoras themselves may
gain long-term benefit from the experience, including an ongoing commit-
ment to their own health and their own leadership development. Their par-
ticipation may increase their social and life networks which is often limited
by their own caregiving responsibilities.
In this section, we use our data and experiences across projects to explore
two questions: (1) how do promotoras view their roles? and (2) how do
promotoras foster change?
4.1. Methods
Focus groups were conducted with promotoras and participants to evaluate
the project. For this chapter, we analyzed data from the promotora focus
groups. The focus groups with promotoras were held within each project
after each promotora had completed one or two cases (conducting all of
the home-visit sessions with these cases). We held 5 promotora focus groups
across the projects with a total of 17 different promotoras. All focus groups
were audio-recorded and transcribed. We focused our analysis on responses
to two interview guide questions that were common across focus groups: (1)
how did you feel in your role as promotora? and (2) what did you find that
was most useful to participants? Using content analysis as described by
Skinner, Rodriguez, and Bailey (1999), the lead author and a graduate stu-
dent read through the transcripts independently with a focus on how the
promotoras viewed their roles and what actions they believed fostered
change in participants. We then came together to discuss agreement and
identified common themes. In the following section, we present the results
and include quotes from the promotoras. While the original quotes are in
Spanish, the English translated versions are presented to facilitate the flow
of the chapter.
4.2. Results
From our analysis, we defined two broad categories, personal growth of
the promotora and the mechanisms they believed lead to change in partic-
ipants. Within these categories, several themes emerged which are discussed
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below. For the purpose of avoiding repetition, we will refer to the Caring for
Myself project as CM and the Parents Taking Action project as PTA.
4.2.1 Promotoras’Personal Growth
While most promotoras expressed that they were nervous on their first visit
and felt apprehension about how they would be received, they indicated that
they soon became confident in their role as promotoras. A promotora in the PTA
project said, “I felt comfortable because I know something about the theme
of autism and the school system.” In addition to the training for the project,
being a mother of a child with autism gave her confidence that she was
knowledgeable. Promotoras discussed how their role as a promotora helped
them to build their own self-esteem.
Several of the promotoras from both projects indicated that they learned
new information that they could use for themselves or their families. One promotora
from CM said, “For me personally, I am learning a great deal about many
things I did not understand well before.” They reported that each time they
reviewed the information in preparation of a visit or with a participant, they
learned something new. A promotora from PTA said, “No, truly, every time
I read the manual, and I am now on my fifth participant, I read it again and
better understand the things and I say WOW! And I talk with the families,
look at this and look at that; I share with my husband and my kids what
I learned. And each time I learn more and more. I have learned so much.”
These views reinforce the idea that one learns by teaching, an idea that many
have written about as a pedagogical method, including Freire (1970) who
emphasizes that in teacher–student relationships, both are simultaneously
teachers and learners.
Another personal growth theme that emerged is feelings of accomplishment
and satisfaction with teaching others. Promotoras in the PTA project described
how some mothers had no knowledge about autism and how to help their
child and were very excited to learn from them. “I felt very happy when
I saw that the parents didn’t know anything and we began to talk and they
were very appreciative of the information we give them.” Promotoras from
both projects expressed the satisfaction they received when participants val-
ued their visits and interactions.
Promotoras discussed how their roles as promotoras lead them to action in
their own lives or to feel more motivated. A promotora from CM said, “I am very
happy because I was so sad and I feel very motivated when the people I work
with are very happy or as they have told me, very content (to participate and
learn in the program).” As discussed earlier, Latina mothers in general have
64 Sandra Magaña et al.
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high rates of depression and the promotoras are not immune to psycholog-
ical distress. This promotora felt that her role as a promotora helped to lift her
out of her sadness. Several mothers in the CM project indicated that they
needed to change their own health behaviors in order to serve as a role
model to others. One promotora said, “I am more aware that I have to exer-
cise. I make time to work out for 15 minutes and its working great for me.”
Another promotora discussed how her consciousness about her own health
was increased which led to her ability to deliver the program in an authentic
and caring way to the participant.
4.2.2 Mechanisms for Change
The promotoras across programs discussed the theme of being a role model and
having shared experiences with participants as an important aspect of encour-
aging participants to change. This highlights the unique aspect of our
promotora programs, that the promotoras are not only from the same com-
munity, but they also have children with similar disabilities. A promotora
from the CM project illustrates this by saying, “I believe that [the most
effective aspect] was to have someone to talk to about the problems they
are facing, someone who understands them and doesn’t criticize them.”
A promotora from the PTA project described how she used her own expe-
riences as learning tools, “...as I say, the examples, I always base [the con-
tent] with examples or stories from my son.” The idea of being a role model
and using examples from their own experiences fits well with Bandura’s
(1977) concept of vicarious experiences as a mechanism for change.
These statements also highlight the importance of discussion and dialogue
with the participants, an aspect of education emphasized by Freire (1970).
One promotora said, “it’s a very mutual conversation.” Another discussed
how she gave the participant choices of what she wanted to discuss and what
goals she would like to work on. Promotoras created a nonjudgmental space
that made participants feel comfortable.
An important part of this dialogue according to the promotoras was how
they provided emotional support to the participants. A promotora from the
PTA project said, “It is possible for them to cry and talk with me about what
is going on and how they feel.” Promotoras from the CM project also indi-
cated that the participants would frequently tell them about their problems
related to caring for their child and family and would cry to release the stress
they were feeling.
Teaching advocacy skills and providing resource information was a key part of
what promotoras offered participants. In the PTA project, promotoras
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indicated that some participants were surprised to learn they had the right to
ask for services for their children. Promotoras also reported that some parents
knew about certain services but did not know how to access them. In the
CM project, promotoras stated that they spent a lot of time providing
resource information to participants to meet their specific needs. For exam-
ple, a CM promotora said, “One participant with a 10 year old daughter did
not know where to go to ask for a handicap plaque and I gave her the
information...”
4.3. Discussion
In our focus groups with promotoras, we learned new information about
how they benefited from their role as promotoras. We have not found
any research that has investigated how being a promotora may lead to per-
sonal growth for those who serve in this role. Our findings show that the
promotoras develop their own self-confidence, self-efficacy if you will,
through the process of engaging with participants, consistent with
Bandura’s (1977) self-efficacy theory. They also talked about how they
learned a lot for themselves and their own families through the process of
learning the curriculum and then teaching it to others. The promotoras tal-
ked about how they received great satisfaction with teaching, interacting
with, and helping other mothers similar to them. Lastly, they talked about
how the program raised their own consciousness about action they needed
to take in their own lives, consistent with Freire’s (1970) theory about con-
cientizacio
´n or critical consciousness.
With respect to mechanisms for change among participants, role
modeling and providing vicarious experiences through their own examples
was a key element discussed by the promotoras. Using reciprocal conver-
sation and dialogue was an important element as well, consistent with
Freire’s dialogic approach to education. As in the study by Reinschmidt
et al. (2006), we found that social support is a key factor that contributed
to their success with participants. Our promotoras emphasized both emo-
tional support provided by listening to participants problems and instru-
mental support of helping them to navigate services. The emotional
support is also consistent with Bandura’s (1977) theory as he emphasized
the role that emotional states play in behavioral change. Overall, our find-
ings are consistent with both self-efficacy and empowerment theories as
mechanisms for change.
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5. CONCLUSION
In this chapter, we discussed the rewards and challenges of caring for a
child with IDD and reviewed the literature on Latino families of children
with IDD. Most parents are socialized to expect that they will have children
without impairments or disability (Berger, 2013). Children with develop-
mental disabilities have many needs that parents are often not initially
prepared to meet. These needs are related to delayed language and develop-
ment, which require early intervention and treatment. Often these delays
lead to child maladaptive behaviors as children can become frustrated with
their ability to communicate and get their needs met. As a result, caring for a
child with IDD can be stressful due to the ongoing need to access and nav-
igate services for their child, learn to manage maladaptive behaviors, and
the general stigma placed on parents by other community members who
do not understand the experiences and unique needs of children with
IDD. Consequently, interventions that can help families navigate systems,
help promote their children’s development, and reduce problem behaviors
are needed.
In our review of literature of Latino children with IDD, we found that
some of these stressors can be compounded by immigration status, language
barriers, and socioeconomic status for Latino parents. Latina mothers face
higher rates of depressive symptoms and more physical health problems than
their NLW counterparts. Additionally, research finds disparities in health
care and specialty services for Latino children compared to white children.
Latino parents consistently report limited information about their child’s
disability and services. At the same time that Latino families experience
challenges, they report high levels of the positive impact of caring for their
child with IDD and positive well-being. Therefore, interventions that
address the specific needs and take into account the strengths of these families
are needed.
We reviewed the literature on interventions designed for parents and
families of children with IDD. Most of the interventions we found are
not new but are important to revisit. Many interventions have been devel-
oped to help children with IDD to develop functional skills, improve lan-
guage, and reduce problem behaviors. Many of these interventions are
designed to be parent implemented (in which professionals teach parents
specific strategies to use with their children) and have shown good
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outcomes. An important contribution coming from the field of develop-
mental disabilities is the development of parent-to-parent or peer-led inter-
ventions. The research on these programs stressed the importance of having
peers that understand the challenges faced by parents of children with IDD
because they experience these challenges themselves.
A limitation of the research on interventions for families and children
with IDD is that few studies have included substantial numbers of people
from underrepresented minority groups. Because Latinos represent the larg-
est minority population, it is important to develop more interventions
targeted to this population. We were only able to find four interventions
specifically designed for Latino families of children with or at risk for IDD.
Building on the peer-led interventions developed for children with IDD
and the need for culturally based interventions, we investigated the use of the
promotora de salud (community health worker) model that is prevalent in
public health research and programs. Many studies have shown positive out-
comes on understanding health issues and changing health behaviors among
Latino populations; however, none have used this model to develop inter-
ventions for families of children with IDD.
In this chapter, we established that using a promotora de salud model for
Latino families and children with IDD is a promising approach and describe
two projects we developed and tested using the promotora de salud model.
We found that it was necessary to use a community-based approach to
research, and through the process of developing and implementing these
interventions, we learned some lessons that will guide our future research
and could be helpful to others. These lessons include the need to have share
goals with the community partner, and to consider and budget for funding
that the community partner will need to collaborate on the research. Over-
all, our findings from the two projects reported elsewhere show positive out-
comes using the promotora de salud approach.
Lastly, in this chapter, we analyzed qualitative data from focus groups we
held with the promotoras from our projects in order to gain understanding
in why the promotora interactions lead to positive outcomes for our partic-
ipants. The promotoras articulated various mechanisms that they used
including acting as role models and sharing experiences, using dialogue,
and providing emotional and advocacy support. We also found that the
promotoras personally benefited from their role. They discussed how they
learned by teaching; through the training, preparation, and delivery of the
program, they learned more about promoting their own health and how to
better help their children. Because they viewed themselves as role models,
68 Sandra Magaña et al.
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they were motivated to put some of the strategies they were teaching into
action for themselves and their families. Additionally, they expressed how
they received great satisfaction from their role and their interactions with
participants.
Our future research will investigate whether these interventions function
well across different geographic sites and with different populations.
Another important area of research is to investigate how to scale up the pro-
jects and make them easy for CBOs to implement on their own. While our
two projects focused on caregiver health and young children with autism,
there is potential to develop different content targeting different issues
and using this mode of service delivery.
Given that the research reporting the development of interventions for
Latino families of children with IDD is extremely limited, there is a good
deal of room for future research to design and test a wide range of interven-
tions with different modes of delivery. We look forward to see more
research that addresses this critical need.
ACKNOWLEDGMENTS
Support for this research was provided by the University of Illinois at Chicago Rehabilitation
Research and Training Center on Aging with Developmental Disabilities Lifespan Health
and Function (NIDRR H133B080009); and the University of Wisconsin Institute for
Clinical and Translational Research (NIH 1UL1RR025011). Special thanks to our
community partners, promotoras, and participants.
REFERENCES
Ainbinder, J. G., Blanchard, L. W., Singer, G. H. S., Sullivan, M. E., Powers, L. K.,
Marquis, J. G., et al. (1998). A qualitative study of parent to parent support for parents
of children with special needs. Journal of Pediatric Psychology,23, 99–109. http://dx.doi.
org/10.1093/jpepsy/23.2.99.
Alegria, M., Shrout, P., Woo, M., Guarnaccia, P., Sribney, W., Vila, D., et al. (2007).
Understanding differences in past year psychiatric disorders for Latinos living in the
US. Social Science & Medicine,65, 214–230.
Ayala, G. X., Elder, J. P., Campbell, N. R., Arredondo, E., Baquero, B., Crespo, N. C., et al.
(2010). Longitudinal intervention effects on parenting of the aventuras Para nin
˜os study.
American Journal of Preventive Medicine,38, 154–162. http://dx.doi.org/10.1016/j.
amepre.2009.09.038.
Bailey, D. B., Correa, V., Arcia, E., Reyes-Blanes, M. E., Rodriguez, P., Vazquez-
Montilla, E., et al. (1999). Needs and supports reported by Latino families of young chil-
dren with developmental disabilities. American Journal on Mental Retardation,104,
437–451.
Bailey, D., Skinner, D., Rodriguez, P., Gut, D., & Correa, V. (1999). Awareness, use, and
satisfaction with services for Latino parents of young children with disabilities. Exceptional
Children,65, 367–381.
69Use of Promotoras de Salud
Author's personal copy

Baker, B. L., Blacher, J., & Olsson, M. B. (2005). Preschool children with and without
developmental delay: Behaviour problems, parents’ optimism and well-being. Journal
of Intellectual Disability Research: JIDR,49, 575–590. http://dx.doi.org/10.1111/
j.1365-2788.2005.00691.x.
Bandura, A. (1977). Self-efficacy: Towards a unifying theory of behavioral change. Psycho-
logical Review,84, 191–215.
Berger,R. (2013). Introducing disability studies.Boulder, Colorado:Lynne RiennerPublishers Inc.
Blacher, J., & Baker, B. L. (2007). Positive impact of intellectual disability on families.
American Journal of Mental Retardation: AJMR,112, 330–348. http://dx.doi.org/
10.1352/0895-8017(2007)112[0330:PIOIDO]2.0.CO;2.
Blacher, J., Begum, G. F., Marcoulides, G. A., & Baker, B. L. (2013). Longitudinal perspec-
tives of child positive impact on families: Relationship to disability and culture. American
Journal on Intellectual and Developmental Disabilities,118, 141–155. 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. Family
Relations,46, 325–334.
Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in
young adults with intellectual disability: Cultural differences in family impact. Journal
of Intellectual Disability Research: JIDR,50, 184–198. http://dx.doi.org/10.1111/
j.1365-2788.2005.00768.x.
Borrego, J., Jr., Anhalt, K., Terao, S. Y., Vargas, E., & Urquiza, A. J. (2006). Parent-child
interaction therapy with a Spanish-speaking family. Cognitive and Behavioral Practice,13,
121–133.
Brady, N. C., Marquis, J., Fleming, K., & McLean, L. (2004). Prelinguistic predictors of lan-
guage growth in Children with developmental disabilities. Journal of Speech, Language, and
Hearing Research: JSLHR,47, 663–677.
Brandon, P. (2007). Time away from “smelling the roses”: Where do mothers raising chil-
dren with disabilities find the time to work? Social Science & Medicine,65, 667–679. http://
dx.doi.org/10.1016/j.socscimed.2007.04.007.
Browne, D. T., Rokeach, A., Wiener, J., Hoch, J. S., Meunier, J.-C., & Thurston, S. (2012).
Examining the family-level and economic impact of complex child disabilities as a func-
tion of child hyperactivity and service integration. Journal of Developmental and Physical
Disabilities,25, 181–201. http://dx.doi.org/10.1007/s10882-012-9295-z.
Bruder, M. B., Anderson, R., Schutz, G., & Caldera, M. (1991). Nin
˜os especiales program.
A culturally sensitive early intervention model. Journal of Early Intervention,15, 268–277.
Butterfoss, F. D. (2006). Process evaluation for community participation. Annual Review of
Public Health,27, 323–340.
Chaidez, V., Hansen, R. L., & Hertz-Picciotto, I. (2012). Autism spectrum disorders in His-
panics and non-Hispanics. Autism: The International Journal of Research and Practice,16,
381–397. http://dx.doi.org/10.1177/1362361311434787.
Child and Adolescent Health Measurement Initiative (2013). Who are the children with
special healthcare needs (CSHCN)? Data Resources Center, supported by the Cooperative
Agreement 1-U59-MC06980-01 from the U.S. Department of Health and Human
Services, Health Resources and Services Administration (HRSA), Maternal and
Child Health Bureau (MCHB). Available from www.childhealthdata.org; Revised
15.04.13.
Cohen, S. R. (2013). Advocacy for the “abandonados”: Harnessing cultural beliefs for Latino
families and their children with intellectual disabilities. Journal of Policy and Practice in Intel-
lectual Disabilities,10, 71–78. http://dx.doi.org/10.1111/jppi.12021.
D’Alonzo, K. (2012). The influence of marianismo beliefs on physical activity of immigrant
Latinas. Journal of Transcultural Nursing,23, 124–133.
70 Sandra Magaña et al.
Author's personal copy

Denney, M. K., Itkonen, T., & Okamoto, Y. (2007). Early intervention systems of care for
Latino families and their young children with special needs: Salient themes and guiding
implications. Infants and Young Children,30, 326–335.
Douma, J. C. H., Dekker, M. C., & Koot, H. M. (2006). Supporting parents of youths with
intellectual disabilities and psychopathology. Journal of Intellectual Disability Research:
JIDR,50, 570–581. http://dx.doi.org/10.1111/j.1365-2788.2006.00825.x.
Durand, T. M. (2010). Latina Mothers’ cultural beliefs about their children, parental roles,
and education: Implications for effective and empowering home-school partnerships.
The Urban Review,43, 255–278. http://dx.doi.org/10.1007/s11256-010-0167-5.
Dybwad, G., & Bersani, H. (1996). New voices: Self advocacy by people with disabilities.
Baltimore, MD: Brookes.
Eisenhower, A. S., Baker, B. L., & Blacher, J. (2009). Children’s delayed development and
behavior problems: Impact on mothers’ perceived physical health across early childhood.
Social Science & Medicine,68,89–99.http://dx.doi.org/10.1016/j.socscimed.2008.09.033.
Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: Social
and economic situation, mental health status, and the self-assessed social and psycholog-
ical impact of the child’s difficulties. Journal of Intellectual Disability Research,47, 385–399.
http://dx.doi.org/10.1046/j.1365-2788.2003.00498.x.
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parent-
ing stress and psychological functioning among mothers of preschool children with
autism and developmental delay. Autism: The International Journal of Research and Practice,
13, 375–387. http://dx.doi.org/10.1177/1362361309105658.
Feinfeld, K. A., & Baker, B. L. (2004). Empirical support for a treatment program for families
of young children with externalizing problems. Journal of Clinical Child and Adolescent Psy-
chology,33, 182–195.
Ferreira, M., & Gendron, F. (2011). Community-based participatory research with tradi-
tional indigenous communities of the Americas: Historical context and future directions.
The International Journal of Critical Pedagogy,3(3), 153–168.
Freire, P. (1970). Pedagogy of the oppressed. New York: Continuum Publishing.
Garcia, S. B., Mendez-Perez, A., & Ortiz, A. A. (2000). Mexican American mothers’ beliefs
about disabilities: Implications for early childhood intervention. Remedial and Special Edu-
cation,21, 90–120. http://dx.doi.org/10.1177/074193250002100204.
Gavidia-Payne, S., & Hudson, A. (2002). Behavioural supports for parents of children with
an intellectual disability and problem behaviours: An overview of the literature.
Journal of Intellectual & Developmental Disability,27, 31–55. http://dx.doi.org/
10.1080/1366825012010919.
Gray, K. M., Piccinin, A. M., Hofer, S. M., Mackinnon, A., Bontempo, D. E., Einfeld, S. L.,
et al. (2011). The longitudinal relationship between behavior and emotional disturbance
in young people with intellectual disability and maternal mental health. Research in Devel-
opmental Disabilities,32, 1194–1204. http://dx.doi.org/10.1016/j.ridd.2010.12.044.
Gross, D., Fogg, L., Webster-Stratton, C., Garvey, C., Julion, W., & Grady, J. (2003). Parent
training with multi-ethnic families of toddlers in day care in low-income urban commu-
nities. Journal of Consulting and Clinical Psychology,71, 261–278.
Hegar, R. (2012). Paulo Freire: Neglected mentor for social work. Journal of Progressive
Human Services,23(2), 159–177.
Hudson, A. M., Matthews, J. M., Gavidia-Payne, S. T., Cameron, C. A., Mildon, R. L.,
Radler, G. A., et al. (2003). Evaluation of an intervention system for parents of children
with intellectual disability and challenging behaviour. Journal of Intellectual Disability
Research: JIDR,47, 238–249. Retrieved from, http://www.ncbi.nlm.nih.gov/
pubmed/12787156.
Iland, E. D., Weiner, I., & Murawski, W. W. (2012). Obstacles faced by Latina mothers of
children with autism. California Journal of Health Promotion,10, 25–36.
71Use of Promotoras de Salud
Author's personal copy

Israel, B. A., Krieger, J., Vlahov, D., Ciske, S., Foley, M., Fortin, P., et al. (2006). Challenges
and facilitating factors in sustaining community-based participatory research partner-
ships: Lessons learned from the Detroit, New York city and Seattle urban research cen-
ters. Journal of Urban Health,83, 1022–1040.
Israel, B., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based
research: Assessing partnership approaches to improve public health. Annual Review of
Public Health,19, 173–202 (Article).
Israel, B., Schulz, A. J., Parker, E. P., & Becker, A. B. (2001). Community-based participa-
tory research: Policy recommendations for promoting a partnership approach in health
research. Education for Health: Change in Learning & Practice,14, 182–197.
Jones, A. L., Hansen, C., Hobbs, K., Chamorro, H., Conway, E., Hubbard, L., et al. (2010).
Collaborating for change: Community-based research and political advocacy. Hinckley
Journal of Politics,11(1), 49–57.
Jones, J., & Passey, J. (2004). Family adaptation, coping and resources: Parents of children
with developmental disabilities and behaviour problems. Journal on Developmental Disabil-
ities,11, 31–46. Retrieved from, http://www.oadd.org/publications/journal/issues/
vol11no1/download/jones%26passey.pdf.
Kaiser, A. P., Hancock, T. P., & Nietfeld, J. P. (2000). The effects of parent-implemented
enhanced milieu teaching on the social communication of children who have autism.
Early Education and Development,11, 423–446.
Kummerer, S. E. (2012). Promising strategies for collaborating with Hispanic parents during
family-centered speech-language intervention. Communication Disorders Quarterly,33,
84–95.
Law, J., Garrett, Z., & Nye, C. (2004). The efficacy of treatment for children with develop-
mental speech and language delay/disorder: A meta-analysis. Journal of Speech, Language,
and Hearing Research: JSLHR,47, 924–943. http://dx.doi.org/10.1044/1092-4388
(2004/069).
Lee, J. (2013). Maternal stress, well-being, and impaired sleep in mothers of children with
developmental disabilities: A literature review. Research in Developmental Disabilities,
34, 4255–4273. http://dx.doi.org/10.1016/j.ridd.2013.09.008.
Lequerica, M. (1995). A culturally sensitive approach to serving low-income Latino pre-
schoolers. Infant-Toddler Intervention,5, 193–205.
Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A.,
Wade, C. M., et al. (2008). Disparities in diagnosis and access to health services for chil-
dren with autism: Data from the national survey of children’s health. Journal of Develop-
mental and Behavioral Pediatrics: JDBP,29, 152–160. http://dx.doi.org/10.1097/
DBP.0b013e318165c7a0.
Magan
˜a, S. (2011). By caring for myself, I can care better for my family: A pilot health edu-
cation intervention. In Paper presented at the state of the science conference proceedings.
Chicago: RRTCADD, UIC.
Magan
˜a, S., Li, H., Miranda, E., & Paradiso de Sayu, R. (2014). Improving health behaviors
of Latina mothers of youths and adults with intellectual and developmental disabilities.
Journal of Intellectual Disability Research. 2014 Apr 24. doi: 10.1111/jir.12139. [Epub ahead
of print].
Magan
˜a, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treat-
ment services among Latino children with autism spectrum disorders. Intellectual and
Developmental Disabilities,51, 141–153. http://dx.doi.org/10.1352/1934-9556-
51.3.141.
Magan
˜a, S., Seltzer, M., & Krauss, W. (2004). The cultural context of caregiving: Differences
in well-being between Puerto Rican and non-Latina white mothers of adults with men-
tal retardation. Mental Retardation,42, 1–11.
72 Sandra Magaña et al.
Author's personal copy

Magan
˜a, S., & Smith, M. J. (2006a). Health outcomes of midlife and aging of Latina and black
American mothers of children with developmental disabilities. Mental Retardation,44,
224–234.
Magan
˜a, S., & Smith, M. J. (2006b). Psychological distress and well-being of Latina and non-
Latina white mothers of youth and adults with an autism spectrum disorder: Cultural
attitudes towards co-residence status. American Journal of Orthopsychiatry,76, 346–357.
Martinez, C., Jr., & Eddy, J. (2005). Effects of culturally adapted parent management training
on Latino youth behavioral health outcomes. Journal of Consulting and Clinical Psychology,
73, 841–851.
Matos, M., Torres, R., Santiago, R., Jurado, M., & Rodriguez, I. (2006). Adaptation of
parent-child interaction therapy for Puerto Rican families: A preliminary study. Family
Process,45, 205–222.
McCabe, P. C., & Meller, P. J. (2004). The relationship between language and social com-
petence: How language impairment affects social growth. Psychology in the Schools,41,
313–321. http://dx.doi.org/10.1002/pits.10161.
McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging
behaviors in people with intellectual disabilities: A meta-analytic study. Journal of Intel-
lectual Disability Research,47, 405–416.
McConachie, H., & Diggle, T. (2007). Parent implemented early intervention for young
children with autism spectrum disorder: A systematic review. Journal of Evaluation in Clin-
ical Practice,13, 120–129. http://dx.doi.org/10.1111/j.1365-2753.2006.00674.x.
McDiarmid, M. D., & Bagner, D. M. (2005). Parent–child interaction therapy for children
with disruptive behavior and developmental disabilities. Education and Treatment of Chil-
dren,28, 130–141.
Minkler, M., & Salvatore, A. L. (2012). Participatory approaches for study design and analysis
in dissemination and implementation research. In R. C. Brownson, G. A. Colditz, &
E. K. Proctor (Eds.), Dissemination and implementation research in health: Translating science
to practice (pp. 192–212). New York: Oxford University Press.
Nemcek, M. A., & Sabatier, R. (2003). State of evaluation: Community health workers. Pub-
lic Health Nursing (Boston, MA),20, 260–270. Retrieved from, http://www.ncbi.nlm.nih.
gov/pubmed/12823786.
Nowak, C., & Heinrichs, N. (2008). A comprehensive meta-analysis of triple P-positive par-
enting program using hierarchical linear modeling: Effectiveness and moderating vari-
ables. Clinical Child and Family Psychology Review,11, 114–144. http://dx.doi.org/
10.1007/s10567-008-0033-0.
Otiniano, A. D., Carroll-Scott, A., Toy, P., & Wallace, S. P. (2012). Supporting Latino com-
munities’ natural helpers: A case study of promotoras in a research capacity building
course. Journal of Immigrant and Minority Health/Center for Minority Public Health,14,
657–663. http://dx.doi.org/10.1007/s10903-011-9519-9.
Parish, S., Magan
˜a, S., Rose, R., Timberlake, M., & Swaine, J. G. (2012). Health care of
Latino children with autism and other developmental disabilities: Quality of provider
interaction mediates utilization. American Journal on Intellectual and Developmental Disabil-
ities,117, 304–315. http://dx.doi.org/10.1352/1944-7558-117.4.304.
Paster, A., Brandwein, D., & Walsh, J. (2009). A comparison of coping strategies used by
parents of children with disabilities and parents of children without disabilities. Research
in Developmental Disabilities,30, 1337–1342.
Ray, L. D. (2002). Parenting and childhood chronicity: Making visible the invisible work.
Journal of Pediatric Nursing,17, 424–438. http://dx.doi.org/10.1053/jpdn.2002.127172.
Reinschmidt, K. M., Hunter, J. B., Ferna
´ndez, M. L., Lacy-Martı
´nez, C. R., de
Zapien, J. G., & Meister, J. (2006). Understanding the success of promotoras in increas-
ing chronic disease screening. Journal of Health Care for the Poor and Underserved,17, 256.
73Use of Promotoras de Salud
Author's personal copy

Rhodes, P. (2003). Behavioural and family systems interventions in developmental disability:
Towards a contemporary and integrative approach. Journal of Intellectual and Developmental
Disability,28, 51–64. http://dx.doi.org/10.1080/1366825031000086894.
Rhodes, S. D., Foley, K. L., Zometa, C. S., & Bloom, F. R. (2007). Lay health advisor inter-
ventions among Hispanics/Latinos: A qualitative systematic review. American Journal of
Preventive Medicine,33, 418–427. http://dx.doi.org/10.1016/j.amepre.2007.07.023.
Rivers, P. A., & Patino, F. G. (2006). Barriers to health care access for Latino immigrants in
the USA. International Journal of Social Economics,33, 207–220. http://dx.doi.org/
10.1108/03068290610646234.
Robbins, V., Johnston, J., Barnett, H., Hobstetter, W., Kutash, K., Duchnowski, A. J., et al.
(2008). Parent to parent: A synthesis of the emerging literature. Tampa, FL: University of
South Florida, The Louis de la Parte Florida Mental Health Institute, Department of
Child & Family Studies.
Roberts, M. Y., & Kaiser, A. P. (2011). The effectiveness of parent-implemented language
interventions: A meta-analysis. American Journal of Speech-Language Pathology,20,
180–199.
Roberts, C., Mazzucchelli, T., Studman, L., & Sanders, M. R. (2006). Behavioral family
intervention for children with developmental disabilities and behavioral problems. Jour-
nal of Clinical Child and Adolescent Psychology,35, 180–193.
Sanders, M. R. (1992). Enhancing the impact of behavioural family intervention with chil-
dren: Emerging perspectives. Behaviour Change,9, 115–119.
Santarelli, G., Koegel, R. L., Casas, J. M., & Kern Koegel, L. (2001). Culturally diverse fam-
ilies participating in behavior therapy parent education programs for children with devel-
opmental disabilities. Journal of Positive Behavior Interventions,3, 120–123. http://dx.doi.
org/10.1177/109830070100300209.
Santelli, B., Turnbull, A., Marquis, J., & Lerner, E. (1995). Parent to parent programs:
A unique form of mutual support. Infants and Young Children,8, 48–57.
Singer, G. H. S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of
parenting and stress management interventions for parents of children with developmen-
tal disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research
Reviews.357–369.http://dx.doi.org/10.1002/mrdd.
Singer, G. H. S., Marquis, J., Powers, L. K., Blanchard, L., Divener, N., Santelli, B., et al.
(1999). A multi-site evaluation of parent to parent programs for parents of children with
disabilities. Journal of Early Intervention,22, 217–229.
Skinner, D., Rodriguez, P., & Bailey, D. (1999). Qualitative analysis of Latino parents reli-
gious interpretations of their child’s disability. Journal of Early Intervention,22, 271–285.
Sofronoff, K., Jahnel, D., & Sanders, M. (2011). Research in developmental disabilities
stepping stones triple P seminars for parents of a child with a disability: A randomized
controlled trial. Research in Developmental Disabilities,32, 2253–2262. http://dx.doi.
org/10.1016/j.ridd.2011.07.046.
Stacciarini, J. R., Rosa, A., Ortiz, M., Munari, D. B., Uicab, G., & Balam, M. (2012).
Promotoras in mental health: A review of English, Spanish, and Portuguese literature.
Family Community Health,35, 92–102.
Tellegen, C. L., & Sanders, M. R. (2012). Using primary care parenting interventions to
improve outcomes in children with developmental disabilities: A case report. Case
Reports in Pediatrics,2012, 150261. http://dx.doi.org/10.1155/2012/150261.
Tellegen, C. L., & Sanders, M. R. (2013). Stepping stones triple P-positive parenting program
for children with disability: A systematic review and meta-analysis. Research in Developmen-
tal Disabilities,34, 1556–1571. http://dx.doi.org/10.1016/j.ridd.2013.01.022.
Twombly, E. C., Holtz, K. D., & Stringer, K. (2012). Using promotores programs to
improve Latino health outcomes: Implementation challenges for community-based
74 Sandra Magaña et al.
Author's personal copy

nonprofit organizations. Journal of Social Service Research,38, 305–312. http://dx.doi.org/
10.1080/01488376.2011.633804.
U.S. Census (2010). The Hispanic population: 2010. Retrieved 05.04.12, from, http://2010.
census.gov/2010census/data/.
WesRasmus, E. K., Pineda-Reyes, F., Tamez, M., & Westfall, J. M. (2012). Promotores de
salud and community health workers: An annotated bibliography. Family Community
Health,35, 172–182.
Williamson, A. A., Knox, L., Guerra, N. G., & Williams, K. R. (2014). A pilot randomized
trial of community-based parent training for immigrant Latina mothers. American Journal
of Community Psychology,53, 47–59. http://dx.doi.org/10.1007/s10464-013-9612-4.
Withrow, R. L. (2008). Early intervention with Latino families: Implications for practice.
Journal of Multicultural Counseling and Development,36, 245–256.
75Use of Promotoras de Salud
Author's personal copy