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Balancing Fidelity and Flexibility of Manualized Interventions in Cultural Adaptation: Issues to Consider

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Abstract

Naturalistic developmental behavioral interventions (NDBIs) are considered one of the best practices for autistic children and their families. Most NDBIs include a component of providing training and/or coaching to caregivers to enhance skill acquisition and generalization. The procedures to implement these NDBIs are often clearly delineated in manuals, which include intervention and implementation fidelity criteria to measure the providers’ and caregivers’ adherence to these procedures. Despite the identified benefits of achieving fidelity, there is a potential tension between fidelity and flexibility, especially when culturally adapting and implementing manualized NDBIs to be applied in community settings. We present four main issues and possible solutions when planning and implementing NDBIs and other manualized evidence-based practices with marginalized populations.
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Educ. Treat. Child.
https://doi.org/10.1007/s43494-023-00102-z
COMMENTARY
Balancing Fidelity andFlexibility ofManualized
Interventions inCultural Adaptation: Issues toConsider
JamesD.Lee · HeddaMeadan· VeronicaY.Kang· AdrianaKaoriTerol
Accepted: 13 June 2023
© Association for Behavior Analysis International 2023
Abstract Naturalistic developmental behavioral
interventions (NDBIs) are considered one of the best
practices for autistic children and their families. Most
NDBIs include a component of providing training and/
or coaching to caregivers to enhance skill acquisition
and generalization. The procedures to implement these
NDBIs are often clearly delineated in manuals, which
include intervention and implementation fidelity cri-
teria to measure the providers’ and caregivers’ adher-
ence to these procedures. Despite the identified ben-
efits of achieving fidelity, there is a potential tension
between fidelity and flexibility, especially when cul-
turally adapting and implementing manualized NDBIs
to be applied in community settings. We present four
main issues and possible solutions when planning and
implementing NDBIs and other manualized evidence-
based practices with marginalized populations.
Keywords Fidelity· Flexibility· Cultural
adaptation
Naturalistic developmental behavioral interventions
(NDBIs) are designed based on principles of applied
behavior analysis and developmental science and con-
sidered evidence-based practice (EBP) for autistic chil-
dren and their families (Frost etal., 2020). These inter-
ventions are focused on promoting social, cognitive,
play, language, and communication skills among young
children with autism and other neurodevelopmental dis-
abilities (Crank etal., 2021; Kasari etal., 2015; Schreib-
man et al., 2015). NDBIs are intended to be imple-
mented in the child’s natural environments during daily
routines through play and child-led activities and materi-
als (Sandbank etal., 2021; Schreibman etal., 2015), and
most NDBIs include a component of caregiver training
and/or coaching to enhance generalization of skills and
to increase learning opportunities for the child through-
out the day (Haine-Schlagel etal., 2020; Meadan etal.,
2023; Wallace & Rogers, 2010). NDBIs have been
found to have positive outcomes for both children and
caregivers, and caregivers who have participated in
NDBI research have reported increased self-efficacy,
self-confidence, empowerment, and competence (Haine-
Schlagel etal., 2020; Szlamka et al., 2022). To achieve
these positive outcomes, NDBI developers have empha-
sized the importance of delineating clear procedures for
implementing the intervention (Schreibman etal., 2015),
which are often described in intervention manuals.
Fidelity
Implementation fidelity is the degree to which an
intervention adheres to the original intervention pro-
tocol (Lieberman-Betz, 2015) and is often expected
J.D.Lee(*)
Department ofPsychiatry andBehavioral Sciences,
University ofWashington School ofMedicine, Seattle,
WA, USA
e-mail: james153@uw.edu
H.Meadan· A.K.Terol
Department ofSpecial Education, University ofIllinois
Urbana-Champaign, Champaign, IL, USA
V.Y.Kang
Department ofCounseling, Higher Education, andSpecial
Education, University ofMaryland atCollege Park,
CollegePark, MD, USA
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with manualized interventions. Manualization may
also support caregivers’ acquisition of EBP strate-
gies by including procedures based on adult learning
theory, including sequenced instruction, coaching,
and feedback (e.g., Kaiser & Roberts, 2013; Meadan
etal., 2017; Roberts etal., 2014). Achieving fidelity is
important to ensure meaningful and significant changes
in learners’ target outcomes and to understand the
resources (e.g., time) needed to meet the intervention
goals (Dishion etal., 2017). Further, achieving fidelity
is valuable as researchers could analyze in what ways
the intervention strategies were used in adherence to
the intervention protocol, how interventions could be
implemented across multiple contexts (Barton & Fet-
tig, 2013; Wolery, 2011), and how well an intervention
is being followed by all users (e.g., when practitioners
coach caregivers). Among NDBIs, implementation
fidelity is considered a mediating factor for outcomes
(Sandbank etal., 2020), where higher fidelity is likely
to result in desired outcomes (Lieberman-Betz, 2015;
Schreibman etal., 2015).
It is important that caregiver-implemented inter-
ventions may include different types of fidelity, and
it is important to accurately distinguish them. In
NDBIs, examining how caregivers achieve fidel-
ity is essential as such models are often a part of the
two-tier system (i.e., cascading or “train the trainer
model”; Biggs & Meadan, 2018; Meadan et al.,
2020b) in which the research team trains practition-
ers or community leaders (e.g., Lee et al., 2022;
Magaña etal., 2017) to train caregivers to implement
the intervention. Thus, to accurately determine which
components of the intervention were delivered appro-
priately, it is important to measure and achieve fidel-
ity across all tiers within NDBIs. In other words, it is
important to consider both the fidelity criteria used to
measure the intervention fidelity (i.e., how research-
ers/practitioners train or coach caregivers) and the
implementation fidelity (i.e., how caregivers imple-
ment the intervention).
Cultural Adaptation
Manualized NDBIs and fidelity expectations may
pose challenges to fit specific contexts or popula-
tions (Pickard etal., 2021), especially for cultural rea-
sons. Cultural adaptation can play an important role
in increasing contextual fit when using NDBIs with
diverse families given that they often involve natural
change agents (e.g., caregivers) in a natural environ-
ment (e.g., home). A widely accepted definition of
cultural adaptation is “the systematic modification
of a protocol to consider language, culture, and con-
text in such a way that it is compatible with the cli-
ent’s cultural patterns, meanings, and values” (Bernal
etal., 2009, p. 362), and it serves a unique purpose in
adapting an intervention to enhance dissemination of
EBPs among targeted communities. Cultural adapta-
tion has been broadly used with marginalized autistic
children and their families (DuBay, 2022; Martinez-
Torres etal., 2021; Peredo etal., 2022). The majority
of studies that include cultural adaptation of autism
interventions have based their theoretical orientation
on the Ecological Validity Framework (EVF; Bernal
etal., 1995). The EVF contains eight “dimensions” of
an intervention that could be subject to cultural adap-
tation, including language, persons, context, content,
concepts, metaphors, methods, and goals. Each of
these dimensions allow researchers to consider differ-
ent aspects of an intervention and adapt an interven-
tion beyond just linguistic translation. See Table1 for
description of EVF dimensions and examples from
autism intervention literature.
In terms of NDBIs, community stakeholders,
including practitioners who work with caregivers,
have highlighted the need to adapt procedures to fit
each family’s needs, values, and contexts (Pickard
et al., 2022). Most NDBIs have been developed in
high-income countries with a relatively homogene-
ous sample (Steinbrenner etal., 2022), which makes
adaptation especially necessary when implementing
with marginalized families or in low-resourced set-
tings (Hoekstra, 2022; Szlamka etal., 2022). There-
fore, specific considerations for contextual and cul-
tural adaptation are needed for NDBIs to be feasible
with these populations (Szlamka etal., 2022).
To mitigate this mismatch, a manualized NDBI
might need to consider flexibility along with fidelity
to be culturally adapted specifically to increase the
fit with a particular context or population (e.g., mar-
ginalized families with varying cultural or linguistic
backgrounds) while also maintaining effectiveness.
Such adaptations are then necessary to consider
when evaluating implementation fidelity of NDBIs.
If researchers consider fidelity as a determining factor
of implementation success, a deviation from the orig-
inal procedures that were outlined by the intervention
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developers is likely to be considered low-quality
implementation. Standards of fidelity may also
depend on the cultural contexts in which the interven-
tion was implemented (Sone etal., 2021; Vibert etal.,
2020). Low fidelity with certain aspects or procedures
of an intervention may indicate poor cultural adapta-
tion and may, therefore, suggest specific changes to
increase cultural adaptation.
Intersection ofFidelity andCultural Adaptation
As NDBIs are disseminated across different communi-
ties, there have been some efforts to understand com-
munity stakeholders’ perspectives (Kim & Trainor,
2020; Pickard et al., 2021). For example, Kim and
Trainor (2020) conducted qualitative social validity
interviews with Korean American caregivers who par-
ticipated in a Pivotal Response Training study (Kim,
2019). The caregivers’ narratives highlighted the ben-
efits of having different family members participating
in both training and observation of the intervention to
inform practitioners and researchers on culturally rel-
evant approaches (Trainor & Bal, 2014) in adapting
evidence-based interventions. As a part of these
efforts to disseminate culturally and socially relevant
NDBI practices, reciprocal collaboration with the
stakeholders in the community (Ishimaru, 2017) could
contribute to developing a reliable and valid fidelity
measure that mirrors families’ everyday experiences
and their nuanced cultural beliefs (Barton & Fettig,
2013; Shelton etal., 2018).
Researchers have culturally adapted NDBIs to
address the notorious research-to-practice gaps and the
implementation challenges in “real-life” community
settings among marginalized families. For example,
Sengupta etal. (2020) culturally adapted an evidence-
based NDBI, the Project ImPACT (Ingersoll & Wainer,
2013), to be used with Indian families of young autis-
tic children in response to the dearth of professional
resources in India. The researchers provided detailed
information on their process of culturally adapting this
NDBI, which was largely based on EVF. In the process,
they included components beyond linguistic transla-
tion, such as: (1) forming a community advisory board
to inform appropriateness of the adaptation; (2) piloting
the intervention with a smaller sample of targeted pop-
ulation; (3) modifying the dosage of the intervention
Table 1 EVF Constructs, Descriptions, and Examples
EVF constructs in
Bernal etal. (1995)
Descriptions (Adapted from Bernal etal., 1995; Lee
etal., 2023a)
Examples from autism intervention literature
Language Using culturally appropriate and syntonic language
during the course of intervention
Rephrasing terms that do not have exact equivalent in
the translated language (Sengupta etal., 2020)
Persons Determining roles of cultural similarities among stake-
holders of an intervention
Partnering with community members throughout the
process of cultural adaptation (Garcia-Huidobro
etal., 2019); convening an interdisciplinary technical
assistance board throughout the process (Magaña
etal., 2021)
Metaphors Using symbols, concepts, or common phrases used
among a group
Using dichos in intervention materials and incorporat-
ing storytelling in the manual (Magaña etal., 2017)
Content Incorporating cultural knowledge, values, traditions,
uniqueness, and strengths of a group
Tailoring intervention content to align with cultural
values among Latinx families, including familismo
and personalismo (Kuhn etal., 2020)
Concepts Considering unique cultural concepts or expectations
that are prevalent among a group
Identifying and promoting positive parenting practices
that fits the local context (Lee etal., 2022)
Goals Determining compatibility of goals and intervention
outcomes among a group
Collaborating with community members to identify
needs and interests (Kuhn etal., 2020)
Methods Incorporating cultural knowledge into planning, proce-
dures, and implementation of an intervention
Distributing invitations to participate in research in
multiple languages to promote participation (Lopez
etal., 2019)
Context Considering various economic, cultural, political,
social context in which the intervention is delivered
Providing detailed socioeconomic information of
the city in which the intervention was delivered
(Dababnah etal., 2021)
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and addition of intervention content in consideration
of families in the local contexts; and (4) providing
accommodation for families to be able to participate
(e.g., providing childcare). Sengupta etal. also reported
retaining all key elements and the sequence of the inter-
vention to ensure adherence to the original intervention
protocol. With the adaptations that enhanced contextual
fit, the researchers reported significant gains in parents’
fidelity of implementation, child’s social communica-
tion skills, and parental stress, which are some of the
intended outcomes of the original intervention.
As we understand how fidelity is measured and
why achieving fidelity is important in culturally
adapted NDBIs, there are also some notable exam-
ples of how an EBP was adapted for specific cul-
tural groups with particular consideration of fidelity.
For example, Meadan et al.’s (2020a, b) culturally
adapted the internet-based parent-implemented com-
munication strategies (i-PiCS) intervention for Span-
ish-speaking families in the United States. The i-PiCS
consisted of four main NDBI strategies: (1) environ-
mental arrangement; (2) modeling; (3) mand-model;
and (4) time delay. Adaptations were again based on
the EVF (Bernal etal., 1995) and included, for exam-
ple, training and coaching in Spanish instead of Eng-
lish, and training in a group format instead of indi-
vidual training sessions. Other adaptations included
family accommodations such as childcare for child
participants and siblings, snacks for all participants,
optional transportation to and from the location
of the study, and reminders at the end of each ses-
sion (Meadan etal., 2020a; Sands etal., 2023). The
assessment of fidelity was adapted based on the origi-
nal intervention protocol, and included fidelity across
each level (i.e., coaches and caregivers; fidelity of
intervention and fidelity of implementation).
Discussion ofIssues
The potential tension between fidelity of intervention
and implementation and adaptations can arise because
adhering to the intervention’s protocol or manual may
not always allow for sufficient flexibility for adapta-
tion. In such cases, it may be necessary to find a bal-
ance between the two, or to prioritize one over the
other depending on the specific circumstancesand for
practical reasons. The best approach will depend on
the context of the community, individual situations,
and the goals of the intervention. A few issues or
questions can be considered when balancing the
tension between fidelity and adaptations. Next, we
describe some relevant issues and possible solutions.
Issue 1. For Whom Is a Manualized Intervention
Effective?
One of the issues related to the need to adapt an
intervention is that many manualized interventions
are created in high-income countries and do not
include individuals from marginalized backgrounds
in the development and/or validation process. Indeed,
researchers have reported the “mismatch” between the
composition of the intervention validation group (e.g.,
mostly white, middle class, English-speaking, two-
parent household) and the target population group for
adaptation (e.g., marginalized families with diverse
cultural or linguistic backgrounds; Castro etal., 2004).
Such mismatch results in perpetuation of marginaliza-
tion and inequity in accessing EBPs and poses a threat
to wide implementation and dissemination of EBPs
both in clinical and research settings (Aggarwal etal.,
2016). This may also contribute to our limited under-
standing related to whom and under what condition(s)
the intervention is effective. When marginalized indi-
viduals are not included in the development of manu-
alized interventions, their characteristics and needs
may not be adequately represented in the research that
forms the basis for these interventions.
Possible Solution: Include Diverse Populations
intheDevelopment ofEach Intervention.
Researchers should seek to clearly document for whom
an intervention is effective within studies. Castro etal.
(2004) listed out several possible sources of mismatch,
including language, socioeconomic status, risk factors,
and community readiness, which are critical character-
istics that could precipitate successful implementation
of an EBP. These may be important areas for research-
ers to consistently document in regards to participant
samples used in NDBI effectiveness studies. It is also
important that researchers strive for inclusion in the
development of manualized interventions. Inclusion of
marginalized individuals in the development of manu-
alized interventions will increase the likelihood that
these interventions are designed and implemented in a
way that is inclusive of, accessible to, and effective for
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people who have historically been marginalized or dis-
advantaged due to factors such as race, ethnicity, gen-
der, sexual orientation, socioeconomic status, disability,
or other characteristics. This process can involve solicit-
ing input and feedback from these individuals related to
the dimensions that were described in the EVF, as well
as ensuring that the interventions are culturally sensi-
tive and responsive to the unique needs and experiences
of marginalized groups. Using community-partnered
participatory research (Jones & Wells, 2007), research-
ers may gain practical solutions on how to solicit input
and feedback from community members during the
process of intervention development and adaptation,
which is much needed in autism intervention research
(Vivanti et al., 2018). Community-partnered partici-
patory methods of research can also promote equity
and target traditionally underrepresented populations
in autism research as community partners engage in
research from the beginning (e.g., Stahmer etal., 2020).
Community partnership may take different forms, and
it could include multiple activities such as determining
procedures and goals of an intervention (e.g., Chang
etal., 2016; Locke etal., 2022). Such efforts may also
shift our paradigm of how fidelity is achieved in manu-
alized interventions. As most autism interventions are
developed with a relatively homogenous population,
fidelity requirements may also change when we develop
an intervention that includes much more diverse
populations.
To include these populations in research, diverse
strategies for recruitment and retention are needed
(e.g., Sands et al., 2023). For example, Machal-
icek et al. (2022) conducted a literature review on
recruitment and retention strategies specifically for
marginalized families in autism parenting interven-
tion research. Their review included 68 articles and
revealed various strategies for both recruitment,
such as recruiting via (1) service agencies including
schools, physicians, community agencies; (2) online
or social media; and (3) word of mouth; and retention,
such as providing (1) free childcare; (2) educational
materials; (3) flexible scheduling; (4) reminders; and
(5) choice of intervention. In addition, Williams etal.
(2022) emphasized the importance of using diversity
advisory boards as a group that represents members,
scholars, and area experts of the targeted marginal-
ized population to address research-to-practice gaps
and include populations that have been largely over-
looked in research. As such, recruitment and retention
efforts could also be culturally responsive, and each
dimension in EVF may also be considered during an
intervention, which will bring meaningful changes
in including a more diverse pool of participants in
autism intervention research and promote equity.
Issue 2. How Do We Make Sure Manualized
Interventions Have Contextual Fit?
Another possible problem with manualized interven-
tions is that they may not be flexible enough to reflect
and accommodate the unique needs and experiences
of marginalized families. This can lead to a lack of
cultural sensitivity and may result in interventions
that are not appropriate or effective for these individ-
uals. It is important to ensure that manualized inter-
ventions are developed in a way that is inclusive and
takes into account the diverse needs and experiences
of all individuals, including those who have been his-
torically marginalized.
Possible Solution: Systematically Adapt
anIntervention forIncreased Contextual Fit.
To ensure a manualized intervention has contextual
fit for a specific population, it is important to care-
fully assess the contextual fit of an intervention with
the target population, then systematically adapt an
intervention. As seen in the example of culturally
adapted Project ImPACT (Sengupta etal., 2020), cul-
tural adaptation encompasses aspects of an interven-
tion that are beyond mere linguistic translation, and
behavioral researchers have noted this in their efforts
to culturally adapt several EBPs. Researchers, there-
fore, may use existing tools based in models of cul-
tural adaptation to evaluate contextual fit and conduct
systematic cultural adaptation. For example, Lee etal.
(2023a) developed the Cultural Adaptation Check-
list (CAC) to assess and guide a rigorous process of
culturally adapting an existing intervention, which
was based on the EVF. Similar to the original EVF,
there are seven dimensions including (1) language;
(2) persons; (3) content; (4) goals; (5) methods; (6)
context; and (7) process (newly added dimension).
Each dimension represents an aspect of an interven-
tion that researchers and practitioners could consider
for culturally adapting, and there are a total of 32
items across these dimensions. For example, persons
dimension includes items related to partnering with
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community members to solicit feedback when cultur-
ally adapting an intervention, and method dimension
includes items related to accommodations to enhance
research or program participation among marginal-
ized families. The goals dimension includes items
to examine the social validity of goals, procedures,
and outcomes (Wolf, 1978) and the compatibility of
these components of an intervention with the targeted
population.
Lee etal. (2023b) conducted a literature review of
16 studies on caregiver-implemented interventions
that were culturally adapted and disseminated among
marginalized families. In this review, there were a
wide range of reported practices in culturally adapt-
ing caregiver-implemented interventions, and most
focused on addressing items in goals and context
dimensions that have strong focus on appropriateness
of an intervention within the targeted community. For
example, the majority of studies reported “learning
about the targeted population and individualize the
intervention based on the participants’ needs,” and
“ensuring that the research team is familiar with the
culture and resource levels of the targeted population
prior to intervention adaptation and implementation,”
which are within the goals and context dimensions
described in the CAC. This indicates that it is impor-
tant to have a deep understanding of the targeted com-
munity to promote social validity and buy-in, which
may lead to greater fidelity.
In practice, achieving fidelity could also be benefi-
cial in evaluating the ecological validity of the inter-
vention and the appropriateness of adaptation for each
family/population. For example, cultural adaptation
of NDBIs affects the ways in which caregivers engage
in and are satisfied with the intervention, and in
return, also positively affects the caregivers’ fidelity
of implementation of the intervention (Pickard etal.,
2022). Researchers may examine fidelity indices as
another indicator of whether appropriate contextual
fit was established within an adapted intervention.
In the context of NDBI, partnering with caregiv-
ers and other stakeholders (e.g., advocacy groups) is
crucial to enhancing desired outcomes (Rieth et al.,
2022). Researchers can partner with caregivers who
are the ideal implementers of EBP to support their
child because they could have numerous opportuni-
ties to implement the EBP throughout the day within
their family’s daily routines and in socially relevant
contexts (Crank et al., 2021; Meadan et al., 2020a,
b). This may also provide insight on whether or how
fidelity can be personalized depending on each car-
egiver’s needs, desire, and contexts.
Issue 3. Which Component(s) Can Be Adapted or
Changed?
Given that fidelity may mediate outcomes of NDBI,
researchers need to identify which component(s) of
the intervention can be adapted and which ones are
the active and essential ingredients of the interven-
tion that are not adaptable. For example, when con-
sidering fidelity of the intervention, it is possible that
the format (e.g., online vs. in-person or individual
vs. group) in which a caregiver training is delivered
could be flexible without affecting the outcomes of
the intervention. However, changing the strategies
for promoting adult learning (e.g., removing the feed-
back component in the coaching process) could affect
the desired outcomes. When considering fidelity of
implementation, changing the setting (e.g., caregiver-
child interactions in the living room vs. backyard) or
context (e.g., implementing target strategies during
mealtime vs. play time) might not affect the outcomes
of the intervention. However, changing the specific
strategies for teaching a child how to initiate a com-
munication act could change the outcomes of the
intervention.
Possible Solution: Conduct Component Analysis
orOther Iterative Methods toIdentify Essential
Components
Most manualized interventions include a pack-
age of a few components, and it is the responsibil-
ity of the researchers to identify which ones can be
changed and which ones cannot be changed. To do so,
researchers should systematically evaluate each com-
ponent within the intervention package (e.g., single-
case design with component analysis; D’Agostino
etal., 2023). However, this process can be convoluted
depending on the complexity of an intervention. For
example, Edmunds et al. (2022) provided a frame-
work and a case study of how to identify the core
components of the Reciprocal Imitation Training, an
NDBI for teaching caregivers of young autistic chil-
dren. In this example, Edmunds et al. presented a
systematic and iterative method of identifying active
ingredients of this NDBI, which included activities
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such as (1) literature and document review; (2) inter-
viewing intervention developers and experts; (3) syn-
thesizing consistencies and variation across different
literature; (4) consensus among intervention experts
and stakeholders; and (5) documenting common
components. As such, researchers may replicate this
process to identify some active ingredients of other
NDBIs, which will be helpful in determining which
components are adaptable components to increase
contextual fit (e.g., changing the delivery to online,
modifying dosage) and which are not (e.g., changing
the target outcome of the intervention).
In addition, it is important to differentiate mecha-
nisms of NDBI in which a child’s developmental
outcomes are promoted. For example, playing with a
child may not come naturally to some parents depend-
ing on the local parenting practices or their own
upbringing or they may not have time or have other
obligations in their life that prevent them from play-
ing with their child. Given that play is a critical com-
ponent in many NDBIs and possibly a requirement
to receive a high fidelity score, flexibility on how we
measure fidelity is warranted. For example, if a parent
does not sit down and play with a child as a dedicated
daily routine, researchers may also suggest having a
playful interaction in other routines and settings to
maximize the effects of parent–child interaction while
being responsive and accommodating to diverse par-
enting styles.
Issue 4. When Does an Adapted Intervention Become
a New Intervention?
Lastly, another issue related to adaptation is under-
standing when changes to specific components in
the intervention are significant enough to determine
that the adapted intervention becomes a new inter-
vention that might need a different fidelity measure-
ment and could lead to different outcomes. This issue
may arise when extensive adaptations are made to
an existing intervention to reflect the needs and pro-
mote social validity of an intervention. For example,
Magaña etal. (2021) provided an adapted version of
the Parents Taking Action (PTA) program to parents
in Colombia. The original PTA used a promotora
model in which parent mentors were provided with
training so that they could deliver the intervention to
their peers. However, the PTA that was delivered in
Colombia had two groups of promotora delivering
the interventions, including parents and student pro-
fessionals, due to the input from their partners in
Colombia to reflect the local needs. Although the
peer aspect is an important component in PTA, they
had a group of student professionals delivering PTA
and showed positive results. It is important to con-
sider whether the degree of changes made, like in
this example, may represent a unique intervention
approach that warrants a different system for measur-
ing fidelity.
Possible Solution: Analyze Intervention Goals,
Methods, andOutcomes
Given the above example, researchers need to explore
if adapting an intervention would lead to the devel-
opment of a new intervention. This can be first done
by evaluating if the adapted intervention has differ-
ent goals, methods, and/or outcomes than the origi-
nal intervention (Edmunds etal., 2022). When adapt-
ing a manualized intervention, researchers should
also carefully document all adaptations and consider
the extent to which an intervention was changed. If
changes are made to the essential components of the
intervention, it will be appropriate to test the adapted
intervention in a new study and evaluate its effective-
ness. In addition, the goal of cultural adaptation of
an intervention may include achieving the same out-
comes as an intervention validation group does in an
original intervention. In other words, the purpose of
cultural adaptation is to demonstrate the equivalent
levels of feasibility, acceptability, and effectiveness of
an original intervention, even when the intervention
was not designed for or validated with the targeted
population.
Researchers should therefore carefully document
their adaptations, and there are several helpful tools
that are based on the principles of implementation
science, such as the aforementioned CAC (Lee etal.,
2023a), or the FRAME framework (Stirman et al.,
2019). FRAME may be particularly useful in denot-
ing and characterizing adaptations made to an inter-
vention in more detail, including (1) when and how
the adaptation was made; (2) if the adaptation was
planned or unplanned; (3) decision making process;
and (4) reason for adapting (Stirman et al., 2019).
Related to fidelity, FRAME has a particular focus on
identifying whether an adaptation is fidelity-consist-
ent (i.e., adapting an intervention while preserving
Educ. Treat. Child.
Vol:. (1234567890)
core elements for efficacy), which will be useful in
considering which aspects of an intervention can be
subject to adaptation. Documentation using these
tools may allow researchers to determine systemati-
cally the degree of adaptation and whether an inter-
vention maintains its core components.
Conclusion
Measuring fidelity of both intervention and imple-
mentation is essential for evaluating how closely
an intervention is implemented as it was originally
designed or prescribed in the intervention protocol
or manual. This is important because interventions
are based on a certain set of principles and deviat-
ing from the prescribed approach can potentially
undermine the effectiveness of the intervention. On
the other hand, adaptations and flexibility are also
important when implementing an intervention, espe-
cially with families from diverse backgrounds that
were not represented in the populations included in
the intervention validation. Culturally adapting an
intervention to increase contextual fit for a specific
population is critical for buy-in, acceptance, feasi-
bility, and maintenance (i.e., social validity) of the
intervention (Lee etal., 2023a; Sanchez etal., 2022).
Furthermore, adapting the intervention to better
meet the needs of individuals and communities can
improve the effectiveness of the intervention.
It is worth noting that the questions discussed
above build on each other and help resolve some
issues related to the potential tension between fidel-
ity and feasibility, specifically in cultural adapta-
tion of manualized interventions. As seen above,
cultural adaptation warrants efforts to increase the
contextual fit of an EBP in diverse settings, such
as homes, clinics, schools, or community; thus,
it requires careful and intentional consideration
and planning of intervention individualization. To
advance cultural adaptation of NDBIs while main-
taining fidelity, the following would be helpful to
researchers in increasing their reach: (1) determin-
ing for whom specific NDBIs are effective; (2)
ensuring and describing how manualized interven-
tions are contextually fit; (3) identifying core com-
ponents and adaptable periphery of the interven-
tion; and (4) documenting adaptations throughout
the course of intervention.
Declarations
Conflict of Interest We have no conflict of interest to dis-
close.
References
Aggarwal, N. K., Cedeño, K., Guarnaccia, P., Kleinman, A.,
& Lewis-Fernández, R. (2016). The meanings of cultural
competence in mental health: an exploratory focus group
study with patients, clinicians, and administrators. Spring-
erplus, 5, 1–13.https:// doi. org/ 10. 1186/ s40064- 016- 2037-4
Barton, E. E., & Fettig, A. (2013). Parent-implemented inter-
ventions for young children with disabilities: A review
of fidelity features. Journal of Early Intervention, 35(2),
194–219. https:// doi. org/ 10. 1177/ 10538 15113 504625
Bernal, G., Bonilla, J., & Bellido, C. (1995). Ecological valid-
ity and cultural sensitivity for outcome research: Issues
for the cultural adaptation and development of psycho-
social treatments with Hispanics. Journal of Abnormal
Child Psychology, 23(1), 67–82.
Bernal, G., Jiménez-Chafey, M. I., & Domenech Rodríguez, M.
M. (2009). Cultural adaptation of treatments: A resource
for considering culture in evidence-based practice. Profes-
sional Psychology: Research & Practice, 40(4), 361–368.
https:// doi. org/ 10. 1037/ a0016 401
Biggs, E. E., & Meadan, H. (2018). Early communication inter-
ventions for young children with intellectual and develop-
mental disabilities: The roles of natural communication
partners. In International review of research in develop-
mental disabilities (Vol. 55, pp. 1–37). Academic Press.
Castro, F. G., Barrera, M., & Martinez, C. R. (2004). The cultural
adaptation of prevention interventions: Resolving tensions
between fidelity and fit. Prevention Science, 5(1), 41–45.
Chang, Y. C., Shire, S. Y., Shih, W., Gelfand, C., & Kasari, C.
(2016). Preschool deployment of evidence-based social
communication intervention: JASPER in the classroom.
Journal of Autism & Developmental Disorders, 46, 2211–
2223. https:// doi. org/ 10. 1007/ s10803- 016- 2752-2
Crank, J. E., Sandbank, M., Dunham, K., Crowley, S., Bottema-
Beutel, K., Feldman, J., & Woynaroski, T. G. (2021). Under-
standing the effects of naturalistic developmental behav-
ioral interventions: A project AIM meta-analysis. Autism
Research, 14(4), 817–834. https:// doi. org/ 10. 1002/ aur. 2471
D’Agostino, S. R., Dueñas, A. D., Bravo, A., Tyson, K., Strai-
ton, D., Salvatore, G. L., Pacia, C., & Pellecchia, M.
(2023). Toward deeper understanding and wide-scale
implementation of naturalistic developmental behavioral
interventions. Autism, 27(1), 253–258. https:// doi. org/ 10.
1177/ 13623 61322 11214 27
Dababnah, S., Shaia, W. E., Kim, I., & Magaña, S. (2021). Par-
ents taking action: Adapting a peer-to-peer program for
parents raising black children with autism. Inclusion, 9(3),
205–224.
Dishion, T. J., Mun, C. J., Tein, J.-Y., Kim, H., Shaw, D. S.,
Gardner, F., Wilson, M. W., & Peterson, J. (2017). The
validation of macro and micro observations of parent–
child dynamics using the relationship affect coding system
Educ. Treat. Child.
Vol.: (0123456789)
in early childhood. Prevention Science, 18(3), 268–280.
https:// doi. org/ 10. 1007/ s11121- 016- 0697-5
DuBay, M. (2022). Cultural adaptations to parent-mediated
autism spectrum disorder interventions for Latin Ameri-
can families: A scoping review. American Journal of
Speech-Language Pathology, 31(3), 1517–1534.
Edmunds, S. R., Frost, K. M., Sheldrick, R. C., Bravo, A.,
Straiton, D., Pickard, K., Grim, V., Drahota, A., Kuhn, J.,
Azad, G., Ramos, A., Ingersoll, B., Wainer, A., Ibanez,
L., Stone, W., Carter, A., & Broder-Fingert, S. (2022). A
method for defining the CORE of a psychosocial interven-
tion to guide adaptation in practice: Reciprocal imitation
teaching as a case example. Autism, 26(3), 601–614.
Frost, K. M., Brian, J., Gengoux, G. W., Hardan, A., Rieth, S. R.,
Stahmer, A., & Ingersoll, B. (2020). Identifying and meas-
uring the common elements of naturalistic developmental
behavioral interventions for autism spectrum disorder:
Development of the NDBI-Fi. Autism, 24(8), 2285–2297.
Garcia-Huidobro, D., Diaspro-Higuera, M. O., Palma, D., Palma,
R., Ortega, L., Shlafer, R., ... & Allen, M. L. (2019). Adap-
tive recruitment and parenting interventions for immigrant
Latino families with adolescents. Prevention Science, 20,
56–67. https:// doi. org/ 10. 1007/ s11121- 018- 0898-1
Haine-Schlagel, R., Rieth, S., Dickson, K. S., Brookman-Frazee,
L., & Stahmer, A. (2020). Adapting parent engagement strat-
egies for an evidence-based parent-mediated intervention for
young children at risk for autism spectrum disorder. Journal
of Community Psychology, 48(4), 1215–1237. https:// doi. org/
10. 1002/ jcop. 22347
Hoekstra, R. A. (2022). Serving the underserved: How can we
reach autism families who systematically miss out on sup-
port? Autism, 26(6), 1315–1319. https:// doi. org/ 10. 1177/
13623 61322 11053 89
Ingersoll, B., & Wainer, A. (2013). Initial efficacy of Project
ImPACT: A parent-mediated social communication inter-
vention for young children with ASD. Journal of Autism
& Developmental Disorders, 43(12), 2943–2952.
Ishimaru, A. M. (2017). From family engagement to equitable
collaboration. Educational Policy, 33(2), 350–385.
Jones, L., & Wells, K. (2007). Strategies for academic and cli-
nician engagement in community-participatory partnered
research. JAMA, 297(4), 407–410.
Kaiser, A. P., & Roberts, M. Y. (2013). Parent-implemented
enhanced milieu teaching with preschool children who have
intellectual disabilities. Journal of Speech, Language, Hear-
ing Research, 56(1), 295–309. https:// doi. org/ 10. 1044/ 1092-
4388(2012/ 11- 0231)
Kasari, C., Gulsrud, A., Paparella, T., Hellemann, G., & Berry,
K. (2015). Randomized comparative efficacy study of par-
ent-mediated interventions for toddlers with autism. Jour-
nal of Consulting & Clinical Psychology, 83(3), 554–563.
https:// doi. org/ 10. 1037/ a0039 080
Kim, S. (2019). Pivotal response treatment for prompting social
behaviors of Korean American children with autism.
Exceptionality, 27(1), 47–64.
Kim, S., & Trainor, A. A. (2020). Applicability and feasibil-
ity of pivotal response treatment with Korean American
children with autism. Education & Training in Autism &
Developmental Disabilities, 55(1), 75–88.
Kuhn, J. L., Vanegas, S. B., Salgado, R., Borjas, S. K.,
Magaña, S., & Smith DaWalt, L. (2020). The cultural
adaptation of a transition program for Latino families of
youth with autism spectrum disorder. Family Process,
59(2), 477–491.
Lee, J. D., Meadan, H., & Oyunbaatar, E. (2022). Parent peer
coaching program: A cascading intervention for parents of
children with autism in Mongolia. Autism, 26(8), 1999–
2014. https:// doi. org/ 10. 1177/ 13623 61321 10706 36
Lee, J. D., Meadan, H., Sands, M., Terol, A., Martin, M., & Yoon,
C. (2023a). The Cultural Adaptation Checklist (CAC): Qual-
ity indicators for cultural adaptation of intervention and
practice. International Journal of Developmental Disabili-
ties. https:// doi. org/ 10. 1080/ 20473 869. 2023. 21769 66
Lee, J. D., Meadan, H., Sands, M., Terol, A., Martin M., &
Yoon, C. (2023b). Appraising quality of cultural adapta-
tion in caregiver-implemented interventions for young
children: A systematic review. [Unpublished manuscript]
Lieberman-Betz, R. G. (2015). A systematic review of fidelity
of implementation in parent-mediated early communication
intervention. Topics in Early Childhood Special Education,
35(1), 15–27. https:// doi. org/ 10. 1177/ 02711 21414 557282
Locke, J., Hassrick, E. M., Stahmer, A. C., Iadarola, S., Boyd,
B., Mandell, D. S., Shin, W., Hund, L., Kasari, C., &
Network, A.I.R.-B. (2022). Using novel implementation
tools for evidence-based intervention delivery (UNITED)
across public service systems for three evidence-based
autism interventions in under-resourced communities:
Study protocol. BMC Psychiatry, 22, 478. https:// doi. org/
10. 1186/ s12888- 022- 04105-9
Lopez, K., Magaña, S., Morales, M., & Iland, E. (2019). Par-
ents taking action: Reducing disparities through a cultur-
ally informed intervention for Latinx parents of children
with autism. Journal of Ethnic & Cultural Diversity in
Social Work, 28(1), 31–49.
Machalicek, W., Glugatch, L., Erturk, B., Brafford, T., Kunze,
M., Drew, C., Douglas, A., Storie, S., Crowe, R., & Magaña,
S. (2022). Recommendations for diversifying racial and eth-
nic representation in autism intervention research: A crosso-
ver review of recruitment and retention practices in pediatric
mental health. Journal of Clinical Medicine, 11(21), 6468.
https:// doi. org/ 10. 3390/ jcm11 216468
Magaña, S., Lopez, K., & Machalicek, W. (2017). Parents tak-
ing action: A psychoeducational intervention for Latino
parents of children with autism spectrum disorder. Family
Process, 56(1), 59–74.
Magaña, S., Tejero Hughes, M., Salkas, K., Gonzales, W.,
Núñez, G., Morales, M., Torres, M. G., & Moreno-Angar-
ita, M. (2021). Implementing a parent education interven-
tion in Colombia: Assessing parent outcomes and percep-
tions across delivery modes. Focus on Autism & Other
Developmental Disabilities, 36(3), 165–175.
Martinez-Torres, K., Boorom, O., Peredo, T. N., Camarata,
S., & Lense, M. D. (2021). Using the Ecological Validity
Model to adapt parent-involved interventions for children
with autism spectrum disorder in the Latinx community:
A conceptual review. Research in Developmental Disabili-
ties, 116, 104012.
Meadan, H., Snodgrass, M. R., Palomo, I., Amenta, C. G., &
Halle, J. W. (2017). A framework for defining contexts for
training and coaching practices. Exceptionality, 4, 253–
269. https:// doi. org/ 10. 1080/ 09362 835. 2016. 11964 51
Educ. Treat. Child.
Vol:. (1234567890)
Meadan, H., Adams, N. B., Hacker, R. E., Ramos-Torres, S., &
Fanta, A. (2020a). Supporting Spanish-speaking families
with children with disabilities: Evaluating a training and
coaching program. Journal of Developmental & Physical
Disabilities, 32(3), 489–507.
Meadan, H., Chung, M. Y., Sands, M. M., & Snodgrass, M. R.
(2020b). The cascading coaching model for supporting ser-
vice providers, caregivers, and children. Journal of Special
Education, 54(2), 113–125. https:// doi. org/ 10. 1177/ 00224
66919 884070
Meadan, H., Sands, M. M., & Chung, M. Y. (2023). Parent-
implemented telepractice autism intervention: A case
study of maintenance and generalization. International
Journal of Environmental Research & Public Health,
20(3), 1685. https:// doi. org/ 10. 3390/ ijerp h2003 1685
Peredo, T. N., Mancilla-Martinez, J., Durkin, K., & Kaiser, A.
P. (2022). Teaching Spanish-speaking caregivers to imple-
ment EMT en Español: A small randomized trial. Early
Childhood Research Quarterly, 58, 208–219.
Pickard, K., Mellman, H., Frost, K., Reaven, J., & Ingersoll,
B. (2021). Balancing fidelity and flexibility: Usual care
for young children with an increased likelihood of having
autism spectrum disorder within an early intervention sys-
tem. Journal of Autism & Developmental Disorders, 53,
656–668. https:// doi. org/ 10. 1007/ s10803- 021- 04882-4
Pickard, K., Wainer, A., Broder-Fingert, S., Sheldrick, R. C.,
& Stahmer, A. C. (2022). Overcoming tensions between
family-centered care and fidelity within early intervention
implementation research. Autism, 27(3), 858–863. https://
doi. org/ 10. 1177/ 13623 61322 11336 41
Rieth, S. R., Dickson, K. S., Ko, J., Haine-Schlagel, R., Gaines,
K., Brookman-Frazee, L., & Stahmer, A. C. (2022). Pro-
vider perspectives and reach of an evidence-based inter-
vention in community services for toddlers. Autism, 26(3),
628–639. https:// doi. org/ 10. 1177/ 13623 61321 10655 35
Roberts, M. Y., Kaiser, A. P., Wolfe, C. E., Bryant, J. D., &
Spidalieri, A. M. (2014). Effects of the teach-model-
coach-review instructional approach on caregiver use
of language support strategies and children’s expressive
language skills. Journal of Speech, Language, & Hear-
ing Research, 57(5), 1851–1869. https:// doi. org/ 10. 1044/
2014_ JSLHR-L- 13- 0113
Sands, M. M., Meadan, H., Ramos-Torres, S., & Fanta, A.
(2023). The cultural and linguistic adaptation of a car-
egiver-implemented naturalistic communication inter-
vention. Early Childhood Education Journal, 51, 43–53.
https:// doi. org/ 10. 1007/ s10643- 021- 01280-4
Sanchez, A. L., Jent, J., Aggarwal, N. K., Chavira, D., Coxe,
S., Garcia, D., La Roche, M., & Comer, J. S. (2022).
Person-centered cultural assessment can improve child
mental health service engagement and outcomes. Jour-
nal of Clinical Child & Adolescent Psychology, 51(1),
1–22. https:// doi. org/ 10. 1080/ 15374 416. 2021. 19813 40
Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy,
M., Feldman, J. I., Canihuante, M., & Woynarosky, T.
(2020). Intervention effects on language in children with
autism: A project AIM meta-analysis. Journal of Speech,
Language, & Hearing Research, 63, 1537–1560.
Sandbank, M., Bottema-Beutel, K., & Woynaroski, T. (2021).
Intervention recommendations for children with autism in
light of a changing evidence base. JAMA Pediatrics, 175(4),
341. https:// doi. org/ 10. 1001/ jamap ediat rics. 2020. 4730
Schreibman, L., Dawson, G., Stahmer, A., Landa, R., Rogers, S.
J., McGee, G. G., Kasari, C., Ingersoll, B., Kaiser, A. P.,
Bruinsma, Y., McNerney, E., Wetherby, A., & Halladay, A.
(2015). Naturalistic developmental behavioral interventions:
Empirically validated treatments for autism spectrum disor-
der. Journal of Autism & Developmental Disorders, 45(8),
2411–2428. https:// doi. org/ 10. 1007/ s10803- 015- 2407-8
Sengupta, K., Mahadik, S., & Kapoor, G. (2020). Glocal-
izing project ImPACT: Feasibility, acceptability and
preliminary outcomes of a parent-mediated social com-
munication intervention for autism adapted to the Indian
context. Research in Autism Spectrum Disorders, 76,
101585. https:// doi. org/ 10. 1016/j. rasd. 2020. 101585
Shelton, R. C., Cooper, B. R., & Stirman, S. W. (2018).
The sustainability of evidence-based interventions
and practices in public health and health care. Annual
Review of Public Health, 39, 55–76. https:// doi. org/ 10.
1146/ annur ev- publh ealth- 040617- 014731
Sone, B. J., Kaat, A. J., & Roberts, M. Y. (2021). Measuring par-
ent strategy use in early intervention: Reliability and valid-
ity of the naturalistic developmental behavioral intervention
fidelity rating scale across strategy types. Autism, 25(7),
2101–2111. https:// doi. org/ 10. 1177/ 13623 61321 10150 03
Stahmer, A. C., Rieth, S. R., Dickson, K. S., Feder, J., Burge-
son, M., Searcy, K., & Brookman-Frazee, L. (2020). Pro-
ject ImPACT for Toddlers: Pilot outcomes of a community
adaptation of an intervention for autism risk. Autism, 24(3),
617–632. https:// doi. org/ 10. 1177/ 13623 61319 878080
Steinbrenner, J. R., McIntyre, N., Rentschler, L. F., Pearson, J. N.,
Luelmo, P., Jaramillo, M. E., Boyd, B. A., Wong, C., Nowell,
S. W., Odom, S. L., & Hume, K. A. (2022). Patterns in
reporting and participant inclusion related to race and ethnic-
ity in autism intervention literature: Data from a large-scale
systematic review of evidence-based practices. Autism, 26(8),
2026–2040. https:// doi. org/ 10. 1177/ 13623 61321 10725 93
Stirman, S., Baumann, A. A., & Miller, C. J. (2019). The
FRAME: An expanded framework for reporting adapta-
tions and modifications to evidence-based interventions.
Implementation Science, 14(1), 1–10.
Szlamka, Z., Hanlon, C., Tekola, B., Pacione, L., Salomone, E.,
WHO CST Team, Servil, C., Hoekstra, R. (2022). Exploring
contextual adaptations in caregiver interventions for families
raising children with developmental disabilities. PloS One,
17(9). https:// doi. org/ 10. 1371/ journ al. pone. 02720 77
Trainor, A. A., & Bal, A. (2014). Development and preliminary
analysis of a rubric for culturally responsive research. Jour-
nal of Special Education, 47(4), 203–216.
Vibert, B. A., Dufek, S., Klein, C. B., Choi, Y. B., Winter, J.,
Lord, C., & Kim, S. H. (2020). Quantifying caregiver change
across early autism interventions using the measure of
NDBI strategy implementation: Caregiver change (MONSI-
CC). Journal of Autism & Developmental Disorders, 50(4),
1364–1379. https:// doi. org/ 10. 1007/ s10803- 019- 04342-0
Vivanti, G., Kasari, C., Green, J., Mandell, D., Maye, M., &
Hudry, K. (2018). Implementing and evaluating early
intervention for children with autism: Where are the
gaps and what should we do?. Autism Research, 11(1),
16–23.https:// doi. org/ 10. 1002/ aur. 1900
Educ. Treat. Child.
Vol.: (0123456789)
Wallace, K. S., & Rogers, S. J. (2010). Intervening in infancy:
Implications for autism spectrum disorders: Intervening
in infancy. Journal of Child Psychology & Psychiatry,
51(12), 1300–1320. https:// doi. org/ 10. 1111/j. 1469- 7610.
2010. 02308.x
Williams, E. D. G., Smith, M. J., & Boyd, B. (2022). Per-
spective: The role of diversity advisory boards in autism
research. Autism, 27(3), 864–869. https:// doi. org/ 10. 1177/
13623 61322 11336 33
Wolery, M. (2011). Intervention research: The importance of
fidelity measurement. Topics in Early Childhood Special
Education, 31(3), 155–157. https:// doi. org/ 10. 1177/ 02711
21411 408621
Wolf, M. M. (1978). Social validity: the case for subjective
measurement or how applied behavior analysis is finding
its heart. Journal of Applied Behavior Analysis, 11(2),
203–214.
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and applicable law.
... Culturally adapting an intervention aims to make them more accessible, contextually fit, and socially valid for marginalized families. Researchers have emphasized the importance of careful considerations when culturally adapting an intervention (e.g., DuBay, 2022; Lee et al., 2023a), which may include activities such as convening community members, obtaining permission from intervention developers or publishers, or translating all intervention materials to the target language. ...
... Other tools and frameworks, such as the FRAME (Wiltsey Stirman et al., 2019) and the Model for Adaptation Design and Impact (MADI; Kirk et al., 2020), would allow researchers and practitioners in EI to carefully plan and report contextual adaptations made to promote better EBP implementation among marginalized families. However, it is important to consider the core functions or components of an EI intervention before making adaptations for increased contextual fit (Edmunds et al., 2022;Kirk et al., 2020;Lee et al., 2023a). ...
... Many NDBIs are "packaged" with different strategies based on developmental science and applied behavior analysis. While this is helpful in achieving intended fidelity, it also makes it difficult to widely disseminate among marginalized families who often live in under-resourced community settings due to stringent requirements, such as cost to become a certified user (Lee et al., 2023a). Therefore, given that most NDBIs contain similar behavior analytic strategies, it is necessary to examine how NDBI strategies are disseminated and taught to marginalized caregivers. ...
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