Examining Cultural and Linguistic Sensitivity of Pathways Early Autism Intervention with Hispanic Families

Abstract

Purpose: This research aimed to evaluate evidence of Pathways parent-mediated early autism intervention as a culturally and linguistically sensitive intervention (CLSI) for Hispanic families with autistic children. Methods: We used Bernal et al.’s ecologically valid (EV) framework to evaluate current practice and Hispanic parents’ perceptions of Pathways 1 ½ years after completing the intervention. Both quantitative and qualitative methods were used. Nineteen parents were contacted, of which 11 completed a semi-structured interview about their experience with Pathways. Results: On average, the group that completed the interview was less educated, had more monolingual Spanish speakers, and rated their general experience with the intervention slightly more positively than those who did not agree to complete the interview. A review of Pathways’s current practices through the lens of the EV framework suggested that Pathways was a CLSI for Hispanic participants in the domains of context, methods, language, and persons. Parental interviews echoed these strengths. However, Pathways did less well balancing evidence-based intervention strategies for autistic children with the heritage value of respeto. Conclusion: Pathways demonstrated strengths regarding cultural and linguistic sensitivity for Hispanic families with young autistic children. Future work with our community stakeholder group will integrate heritage and majority culture perspectives to strengthen Pathways as a CLSI.

Autism spectrum disorder (ASD) is a complex, heterogeneous, neurodevelopmental condition that severely compromises the development of social relatedness, reciprocity, social communication, joint attention, and language. The national prevalence of children on the autism spectrum was estimated by the U.S. Centers for Disease Control and Prevention at 1 in 44 however, autism prevalence varied across US states (Maenner et al., 2021)1.Early identification of autism is crucial as appropriate early intervention can make a significant difference in a child’s joint attention, social communication, and adaptive functioning (Fuller & Kaiser, 2020; Reichow, 2012). Unfortunately, Hispanic children, especially those living in the southern states, are more likely to be underdiagnosed and tend to be older when starting intervention than non-Hispanic White children (Maenner et al., 2021). Contextual, cultural, and linguistic barriers delay diagnosis and intervention (Ferguson & Vigil, 2019; Singh & Bunyak, 2019), impeding Hispanic autistic children’s long-term success (Thomas et al., 2007) 2 and substantially increasing the lifetime cost of specialized care (Jacobson & Mulikck, 2000; Stahmer et al., 2011). The Hispanic population is the largest and one of the fastest-growing culturally diverse ethnic minority groups in the United States (U.S. Census Bureau, n.d.), with 17% of Hispanic households experiencing low income (Shrider et al., 2021), of which the majority (63%) speak Spanish (U.S. Census Bureau, n.d.). Coupled with the escalating prevalence of ASD, it is imperative to increase the participation of Hispanic families experiencing low income in intervention research and ensure the intervention is culturally and linguistically sensitive.

Culturally and Linguistically Sensitive Intervention

Culturally and linguistically sensitive intervention (CLSI) combines evidence-based practices with context and culture to ensure ecological validity while maintaining scientific integrity (Kuhn et al., 2020). With regards to early autism intervention, an accumulation of empirically supported autism interventions has found naturalistic developmental behavioral interventions (NDBIs) have positive effects on social communication, language, play and cognitive skills in autistic children through age six (Crank et al., 2021). NBDIs blend social interactionist (Bruner, 1981) and transactional approaches of development (Sameroff, 2009) with the science of applied behavior analysis to facilitate developmentally-informed skills (Crank et al., 2021; Schreibman et al., 2015). Parent-mediated NDBIs, in which caregivers are coached to implement intervention strategies within the child’s daily interactions, are associated with positive effects on social, communication, and language skills (Crank et al., 2021; Sandbank et al., 2020). Most of this research has been conducted with non-Hispanic White families not experiencing low income (Rollins & De Froy, 2023; Magaña et al., 2021). However, parent-mediated NDBIs can incorporate intervention strategies into culturally and linguistically appropriate activities based on the family’s preferences, home values, and backgrounds, making parent-mediated NBDIs a good candidate for implementing CLSI with families of young autistic children (Rollins et al., 2022; Magaña et al., 2021).

Only a handful of parent-mediated early autism interventions have been adapted or developed for use with Hispanic families experiencing low income, and few employ an NDBI model (DuBay, 2022; Magaña et al., 2021). However, previous research concerning cultural disparities associated with early autism intervention suggests that parent-mediated NDBIs for young Hispanic autistic children have the potential to address contextual, linguistic, and cultural barriers that impede access to intervention (Ferguson & Vigil, 2019; Magaña et al., 2021; Singh & Bunyak, 2019). For example, low-dose home visiting programs can overcome child care and transportation barriers (Magaña et al., 2021). In contrast, high-dose home visiting programs may interfere with work schedules and daily life (Singh & Bunyak, 2019). In addition, interventions delivered in a manner consistent with the Individuals with Disabilities Education Act (IDEA) Part C Early Childhood Intervention (ECI) programs may reduce family barriers related to financial/insurance limitations (Rollins et al., 2021). Part C is a federal grant program that assists states in operating statewide community programs for infants and toddlers with disabilities. Furthermore, interventions delivered in Spanish with Spanish-speaking families may reduce language barriers and feelings of isolation imposed when there is a language mismatch between the interventionist and the family (Magaña et al., 2021; Singh & Bunyak, 2019). Finally, cultural mistrust may emerge when interventionists from the majority culture advise families from non-majority cultures to speak English as the majority status language (Dubay, 2022; Lim et al., 2018; Yu, 2013). Such majority language bias contradicts the emerging consensus that exposure to heritage language is favorable (Paradis et al., 2011; Yu, 2013) and may be necessary for developing cognitive skills when parents are uncomfortable or have little command of the majority status language (Winsler et al., 2014).

Researchers have developed several frameworks that identify intervention characteristics that might require adaptation. However, an agreed-upon standard framework or process has not been established (Kuhn et al., 2020). The ecological validity framework (EV framework; Bernal et al., 1995) has had broad support in guiding the development or adaption of interventions to improve cultural sensitivity and strengthen ecological validity for Hispanic individuals in the US (Kuhn et al., 2020). Further, the EV framework is the most widely used for adapting autism interventions for Hispanic families (Kuhn et al., 2020; Magaña et al., 2021; Martinez-Torres et al., 2021) and other ethnic and racial minority groups (Magaña et al., 2021). The EV framework outlines eight intervention dimensions (i.e., content, methods, language, persons, metaphor, content, concepts and goals) that need consideration to reduce the contextual, linguistic, and cultural barriers described above (Table 1). In addition, Bernal et al. suggest interventions integrate an emic (heritage culture-bound) and etic (majority culture) perspective within the EV framework. By integrating perspectives, culturally sensitive interventions balance heritage and majority culture norms, considering conflicts between the two when providing intervention (etic-emic conflict) and resolving such conflicts in culturally appropriate ways (Punnett et al., 2017; Vargas et al., 2005). For example, conflicts may arise in the concept domain when aspects of parent-mediated interventions do not align with cultural values, especially values around caregiving behaviors (Magaña et al., 2021). Foundational cultural values observed in many Hispanic families’ everyday interactions and practices are familismo (familism) and respeto (respect). The cultural value of familismo highlights the importance of the family unit and the uniquely strong connection of family beyond that of any one individual family member while also providing well-defined roles for all members (e.g., caregivers, children) within the family unit (Calzada et al., 2010; Stein et al., 2014). The cultural value of respeto unfolds within the family unit and is a principal aim and outcome for successful child rearing for many Hispanic parents. That is, to raise a child who demonstrates respeto as shown via obedience and deference towards not only adults in the family but also towards other adults outside the home (Bridges et al., 2012; Guilamo-Ramos et al., 2007). The values of familismo and respeto have been shown to capture culturally unique features of parent-child dyadic interactions and to relate to the language production of Hispanic parents and children (Tamis-LeMonda et al., 2020). Therefore, concepts introduced in culturally sensitive NDBIs for young autistic children should balance the cultural values of familismo and respeto within the context of a parent-mediated intervention program.

Table 1.

Dimensions of the Ecological Validity Framework (Bernal et al., 1995) and Related Pathways Practices

Dimensions	Definition	Related Pathways Practices
Context	Consider the dynamic nature of environmental, socioeconomic, and cultural factors that support CLSI.	+ Intervention is provided in a safe and convenient location for the family (i.e., the home or a preferred community location). + Intervention visits accommodate caregiver’s schedule. + Intervention is low-dose (90 min a week of professional interaction). + The intervention’s focus on social sensory and daily routines reduces financial burden of purchasing toys.
Methods	Intervention methods align with cultural values.	+ Bilingual interventionists adjust words and phrases to match those used in the home. + Multimodal materials are used to accommodate personal learning styles and literacy levels.
Language	Use of culturally appropriate and sensitive language.	+ Intervention and all intervention materials are provided in Spanish and English depending on the family’s preference. − Materials are translations and not adaptations
Persons	Consider the role of the ethnic/racial similarities and differences of the family and interventionist in shaping their relationship.	+ Community workers with pre-established relationships with the families make referrals. + Bilingual interventionists are conscious of building rapport and establish trust throughout. − Not all bilingual interventionists are Hispanic
Metaphors	Include cultural symbols, sayings and concepts that are shared within Hispanic populations.	+ Interventionists work with caregivers to incorporate songs, nursery rhymes and customs from the household into social sensory routines. + Interventionists encourage caregivers to use toys in home and household items for intervention. − Cultural symbols and sayings are not included in the manual.
Content	Intervention content reduces barriers to accessing intervention.	+ Binder includes information about autism. − Binder does not include community resources. − Binder does not include material related to advocacy and empowerment
Concepts	Intervention strategies encompasses knowledge of cultural and family values.	+ Family members are encouraged to learn and implement Pathways intervention strategies (i.e., Familismo). − NDBI strategies of following the child’s lead, using wait time, and limiting demands are not congruent with Respeto.
Goals	Develop intervention objectives or a treatment plan that conforms to cultural values.	− Interventionists collaborate with parents to reshape families’ goals to ensure functionality and developmental appropriateness for autistic children.

Note. CLSI = culturally and linguistically sensitive intervention

Pathways as a CLSI for Hispanic Families

As stated above, very few parent-mediated NDBIs for young autistic children have been adapted or developed for Hispanic families experiencing low income (Dubay, 2022). Two recent randomized control trials (RCTs) evaluated Pathways Early Autism Intervention (Pathways) NDBI using non-overlapping samples within which Hispanic families constituted 49% of participants, whereas the remaining participants included 23% Asian, 19% White, and 9% African American families (Rollins et al., 2021; Rollins & De Froy, 2023). Both studies had a high retention and engagement level from Hispanic families, most of whom experienced low income and were monolingual Spanish speakers (retention rate was 78% for Hispanic families compared with 69% overall). Results found that Pathways had significant and large magnitude effects on improving social skills (Rollins et al., 2021; Rollins, 2022) and adaptive functioning in young autistic children (Rollins et al., 2021), increasing positive parenting behaviors, and reducing parental stress (Rollins et al., 2019). Results did not differ by ethnic group, suggesting that Pathways is an efficacious intervention for young Hispanic autistic children and their families.

Pathways was developed with stakeholders to fit the service delivery model of ECI programs in Texas, where the majority of children receiving services are Hispanic (Texas Health and Human Services, n.d). Bilingual interventionists make 90-minute weekly home visits and coach families using adult learning methods to enhance the family’s capacity to promote their child’s development (DEC, 2014; Dunst & Trivette 2012; Rush & Sheldon, 2011). Parents receive a written and audio version of the Pathways manual in English or Spanish based on the family’s preferred language. 3 Notably, the Spanish version of the manual is a direct translation not an adaptation. The manual contained information about autism and explicit instruction on intervention strategies and suggested activities (see section on Pathways intervention below). In addition, interventionists encouraged parents to integrate strategies into play activities and daily routines appropriate to a family’s preferences based on their home values, backgrounds, and beliefs and to teach strategies to other family members.

Thus, Pathways parent mediated NDBI potentially addresses contextual, linguistic and cultural barriers that can impede intervention access and retention for Hispanic families. The purpose of this paper is to evaluate evidence of Pathways as a CLSI for young Hispanic autistic children and their families using Bernal et al.‘s (1995) EV framework. (EV framework). The aim of this paper is twofold:

1. To use the EV framework to evaluate Pathways current practices and Hispanic parents’ perceptions of the Pathways intervention after 1.5 years.

2. To identify areas where future cultural and linguistic adaptations of the Pathways intervention may be needed.

Method

Participants

Parents who were interviewed for this study took part in a previous RCT evaluating the efficacy of Pathways (Rollins & DeFroy, 2023). Eligibility criteria for the original study included: (a) having a chronological age of less than 48 months at the start of the study; (b) receiving an autism spectrum classification on the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; Lord et al., 2012), administered by an ADOS-2 reliable examiner; (c) having no other known medical, neurological, or genetic concerns or disorders; and (d) having a primary home language of English or Spanish. Standardized assessments were administered to children at baseline at the Callier Center for Communication Disorders by clinical researchers trained to fidelity on all measures (see Rollins et al., 2021 for researcher training, administration, and scoring procedures). Bilingual Spanish-speaking clinical researchers administered all tests and instructions in Spanish for children and parents whose primary language was Spanish. Specific tests were the Vineland Adaptive Behavior Scales, Second Edition (VABS-II; Sparrow et al., 2005), a parent-report measure designed to evaluate personal and social skills for everyday living and has been used extensively to characterize adaptive functioning in autistic children (Aishworiya et al., 2021; American Psychological Association, 2019); the Communication and Symbolic Behavior Scales-Developmental Profile (CSBS DP; Wetherby & Prizant 2002), a direct assessment, characterized social communication skills, and the Parenting Stress Index (PSI-4; Abidin, 2012), a parent report measure, characterized caregiver stress levels. Notably, other researchers have used the ADOS-2, VABS-II, and CSBS-DP successfully with Spanish-speaking autistic children (Ohashi et al., 2012; Stronach & Wetherby, 2017) and there are English and Spanish versions of the VABS-II and the PSI-4.

For the current study, parents were contacted by text during the spring of 2021 which was during the COVID-19 pandemic prior to vaccines being widely available and approximately one and a half years after finishing the Pathways intervention (M = 81 weeks, SD = 19 weeks). It is also noteworthy that children did not receive 3-month follow-up evaluations because assessment dates fell during the height of the pandemic in the spring of 2020 (Rollins & De Froy, 2023). Families were asked to complete a semi-structured interview about their experience with Pathways. The interview included general questions about their perceptions of successes and challenges with program materials, learning and implementing intervention strategies, and coaching components. Out of 19 total Hispanic families contacted, 11 completed the interview (i.e., responders). Nine of the caregivers from the interview group spoke in Spanish during the interview, and two spoke in English. Eight families did not complete the interview (i.e., non-responders) because either a family member had recently died of Covid19 (n = 1), they were busy with medical appointments (n = 1), or they did not respond to the request (n = 6).

Regardless of the time elapsed between intervention and interview, all parents from the interview group could recall details of the intervention. Child characteristics and family demographics for children in the current study were collected at baseline during the original RCT (Table 2). On average, the children had high levels of autism symptomatology on the ADOS-2 and significant delays in adaptive functioning and social communication. Parents participating in the study consented to the original RCT and again to the interview. The Institutional Review Board at the University of Texas at Dallas approved both informed consent procedures.

Table 2.

Group Equivalencies at Baseline for Child and Family Characteristics (N = 19)

Characteristic	Responders (n = 11)		Non-responders (n = 8)		Effect size
	M	SD	M	SD	d
Maternal education (years)	14.3	2.5	15.5	2.0	0.53
PSI Total Parent Stress	67.0	27.8	75.0	23.0	0.31
Child age (months)	35.4	8.5	34.4	10.5	0.11
ADOS-2 Total CSS	8.2	1.9	7.8	1.9	0.23
CSBS DP Total	77.6	12.6	78.1	16.5	0.03
Adaptive Behavior	73.1	10.0	71.3	9.8	0.19
	#		#		V
Child gender (male)	7		7		0.27
Annual family income					0.11
< 50,000	8		5
$50,001-100,000	2		5
> 100,000	1		1
Bilingual/ Monolingual Spanish	3/8		5/3		0.35

Note. d = Cohen’s d, for which 0.2 = small effect, 0.5 = medium effect; PSI = The Parenting Stress Index-Short Form (higher scores = higher stress); ADOS-2 Total CSS = Autism Diagnostic Observation Schedule, Second Edition Total Calibrated Severity Scores (8–10 = high levels of autism symptomatology); CSBS DP Total = Communication Symbolic Behavioral Scales Developmental Profile Total Composite (M = 100, SD = 15); Adaptive Behavior = Vineland Adaptive Behavior Scales, Second Edition, Adaptive Behavior Composite (M = 100, SD = 15); V = Cramer’s V, effect size for which 0.1 = small effect, 0.3 = medium effect, and 0.5 = large effect

Pathways Intervention

Pathways is a low-dose (1.5 h per week), manualized, parent-mediated NDBI. Bilingual interventionists coach caregivers using multimodal methods to disseminate information, demonstrate strategies, provide time for practice with in vivo feedback/guidance, promoting self-reflection and evaluation (Table 3). The units focus in succession on following the child’s lead, using wait time, limiting distractions and demands, face-to-face positioning, mutual gaze, animation, and imitation. Each unit builds on the preceding unit. Therefore, once a parent learns a strategy, they are encouraged to use it with the child for the remaining weeks of the intervention and to integrate the strategy into play activities and daily routines appropriate to a family’s preferences based on their home values, backgrounds, and beliefs and to teach strategies to other family members. Most Pathways strategies are found in other researched-based NDBIs (Brian et al., 2017; Ingersoll & Gergans, 2007; Kasari et al., 2015; Koegel et al., 2009; Wallace & Rogers, 2010; Wetherby et al., 2018). However, Pathways differs in that caregivers are coached to actively engage their child in mutual gaze, which is an essential component of early dyadic interaction in infants with typical development that may activate the social brain network (Johnson et al., 2015; Jones & Klin, 2013). Interventionists typically introduce mutual gaze in week 3 or 4 of the 15-week intervention. Initially, caregivers actively capture the child’s eye gaze during a motivating social sensory routine when the child is not socially orienting to the caregiver’s gaze. Once the caregiver establishes eye gaze, they provide the child with contingent natural reinforcement by continuing the routine. Notably, the strategy requires the caregiver to actively capture the child’s eye gaze without verbal, visual, or physical prompts. (CF Rollins et al., 2021; Rollins & De Froy, 2023 for a more detailed description of Pathways Intervention)

Table 3.

Pathways Coaching Methods and Quotations from Parents

Coaching method	Description of method	Quote [Translation]
Observation/ Reflection	The interventionist collects a digitized video of parent implementing previously learned strategies. Next parent and interventionist review the video identifying strategies the parent uses effectively and those that are challenging.	Los videos y los tengo todavía. Sí me encantan porque pues es que en ese momento pude ver como yo interactuaba con ella y que cosas estaba haciendo bien y qué cosas tal vez podía hacer mejor. Entonces podía mirárme yo, y yo misma decir, ‘esto ya no lo voy hacer así, lo voy hacer de otra forma o le voy hablar de diferente forma’ y así para que ella, o podía a ver también a lo mejor lo que (child’s name) hacia y yo también en ese momento no capté, pero ya en el video lo pude ver. (#158) [The videos and I still have them. Yes, I loved them because in that moment I could see how I interacted with her and what things I was doing right and what things I could improve upon. So I could see myself and at the same time say ‘I am not going to do this like this anymore, I am going to do it another way or I’m going to talk to her in a different way’ or I could also see maybe what (child’s name) did and I also in that moment did not grasp it, but in the video I could see it.]
Self-assessment1	Parent identifies their comfort level, successes, and challenges with each strategy.	“Bueno si lo hice, pero no lo hice muy bien. Me merezco un 3 o 4. Tenía que pensar un poquito ósea reflexionar entre toda la semana, ver mí avance también porque no nomás es su avance, también es mi avance. Y ver, ‘okay, si lo apliqué, pero no lo apliqué tanto. Que merezco, un 3 o un 4?’ Si, como una retroalimentación en ponerme a pensar, ‘cómo fue esa semana?’, y hasta yo misma en pulsarme hacerlo ‘okay, no lo hiciste tanto, ahora vamos a tratar de hacerlo mejor’.” (#54) [Well I did it, but I didn’t do it very well. I deserve a 3 or 4. I had to think a little I mean to reflect on the whole week, to see my progress also because it is not only his progress, it is also my progress. And to see, ‘okay I did apply it, but I did not apply it as much Do I deserve a 3 or a 4?’ Yes, as a feedback for me to think about ‘how was this week?’ and even I myself in pushing myself to do it, ‘okay, you didn’t do it as much. Now we are going to try to do better.”]
Clarification	Interventionist and parent discuss how implementation strategies can be improved, with opportunities for the parent to ask questions.	“Sí me ayudó mucho, muchísimo, porque ella me explicaba de una manera muy detallada y muy específica. Siempre me respondía las preguntas si yo tenía preguntas o dudas, siempre, siempre”. (#152) [Yes, it helped a lot, very much, because she would explain things in a way that was very detailed and very specific. She would always answer my questions if I had any questions or any doubts, always, always.]
New material (If parent is ready to move on)	The interventionist reviews new material verbally. The parent may highlight information in the printed binder.	“Me pareció muy interesante y más, que me fueran dando la información poco a poco. Así no me iba apresurar a leer, vamos a decir lo del final al principio. Entonces como fue poco a poco, como lo iba trabajando, me ayudó mucho para ir entendiendo y ir poniéndolo en práctica.” (#48) [It was very interesting and that they gave me the information little by little. That allowed me to not feel pressured to read, let’s say the end at the beginning. So since it was little by little, how I was working, it helped me a lot to understand and put it into practice.]
Demonstration	Interventionist demonstrates intervention strategies with child, narrating what they are doing, while parent observes.	“…she would do it and it was so magical and I thought, ‘well, it does work and it works with this kid and if she can do it, I’m his mother, I should be able to do it too’, so the role modeling was extremely helpful. It’s definitely not the same as just telling somebody to do it or reading about it.” (#33)
Parent practice	The parent takes the lead in practicing strategies with the child. The interventionist provides positive feedback and suggestions for improvement. Together they problem solve and reflect on parents’ implementation of intervention strategies.	…me ayudo muy bien porque [interventionist] en el principio, lo hacía con ella para que yo lo miraba. Y luego ya después yo lo hacía. Y aparte cuando me explicaba lo del libro, a veces yo no entendía, y yo tenía que preguntarle ‘pero esto no lo entendió, como lo hago?’ y ya ella me lo hacía. Me decía ‘puedes hacer’…Me daba ejemplos, “puedes hacer esto o esto”. ‘Ah, okay, okay.’ Ella trataba de explicármelo para lo más mejor para yo poderlo entender mejor. (#104) […it helped me very much because [interventionist], at the beginning, would do it with her so I could watch. And later, after, I would do it. When she would try to explain what was in the binder, sometimes I would not understand and I had to ask her ‘but I don’t understand, how do I do it?’ and she would do it for me. She would tell me ‘you can do…’ She would give me scenarios, you can do this or that’. ‘Ah, okay, okay’. She would try to explain the best she could in order for me to understand better.]
Develop activity plan	Parent and interventionist create an activity plan for the upcoming week.	“[Interventionist] me explicó bien todo y pude leer, por ejemplo, que cada semana me dejaban ciertas asignaciones (#158) [[Interventionist] explained everything to me and I could read, for example, that every week they left me certain assignments.]

Note: Table 3 adapted from Rollins et al. (2021) with permission (http://creativecommons.org/licenses/by/4.0/)

¹Self-assessment rated using a 4-point Likert scale where 1 = “I don’t know what I don’t know” and 4 = “the strategy comes naturally to me”

Study Design/Data Analytic Strategy

We used both quantitative and qualitative research methods to analyze the data. IBM SPSS statistical package version 27 was used to analyze the quantitative data. To assess selective (non)-response bias, we provide descriptive statistics and effect size estimates to compare the responders and non-responders on child/family characteristics and parents’ perceptions of the intervention immediately after completing Pathways. We used effect size estimates rather than null hypothesis and statistical testing because of low statistical power. Effect size estimates are standardized measures of the magnitude of the effect that are not reliant on sample size. We used three different effect size measures: (a) Cohen’s d for continuous variables (for which 0.2 = small effect, 0.5 = medium effect, 0.8 = large effect); (b) Cramer’s V for categorical variables (for which 0.1 = small effect, 0.3 = medium effect, and 0.5 = large effect); and (c) the r value (i.e., the Z statistic divided the square root of the sample size) obtained from the Mann-Whitney U procedure for ordinal variables (for which 0.1 = small effect, 0.3 = medium effect, and 0.5 = large effect).

For the qualitative analyses, we first document current Pathways practices related to each dimension in the EV Framework. Next, we used a procedural coding method to code the 11 semi-structured interviews. The procedural approach is a qualitative method that uses pre-established codes (Saldaña, 2016). Specifically, to explore parents’ perceptions of their experiences learning and implementing Pathways through a cultural lens, we used a procedural code for each of the eight intervention dimensions from Bernal et al.‘s (1995) EV framework, coding for the cultural values of familismo and respeto in the concept domain. Further, frequency counts are provided to indicate the number of participants who mentioned each intervention dimension and concept.

Social Validity Questionnaire

Responders’ and non-responders’ perception of the intervention immediately after completing the intervention phase of the original study was measured using a 15-item social-validity questionnaire (Rollins et al., 2016). Participants completed the questionnaire within two weeks of finishing the intervention phase of the original study and returned it by US postal mail or email. Parents rated each statement using a 7-point Likert scale (1 = strongly disagree, 4 = neutral, and 7 = strongly agree) that captured their perception of the intervention with regards to: (a) general experience (Items 1–5); (b) ease of incorporating in daily life (Items 6–9); (c) ease of teaching family members (Item 10); and (d) efficacy of the intervention for the child and family (Items 11–15). To reduce the number of comparisons between responders and non-responders, we created a composite variable for each conceptual grouping using principal component analyses. The composite for general experience accounted for 95.01% of the variance contained in the original items. The ease of incorporating in daily life and efficacy composites accounted for 75.77% and 79.30% of the original variance, respectively.

Semi-Structured Interview

A bilingual Hispanic research clinician with a BS in Social Work interviewed the parents using WebEx video conferencing. Video conferencing provides qualitative researchers with a cost-effective and convenient alternative to face-to-face interviewing without sacrificing the quality of the interaction (Gray et al., 2020). An oft-cited disadvantage to online interviews was participants’ reluctance. However, the rapid uptake of video conferencing has alleviated this liability (Gray et al., 2020). Further, Gray et al. found that participants were more comfortable talking about personal topics, such as parenting, in their homes (Gray et al., 2020). These advantages were especially helpful in studies like ours because we conducted the interviews when in-person research was not allowed by the human subjects review board due to the Covid-19 pandemic. Every effort was made for the interviews to go smoothly. Study personnel provided participants with a direct link to the interview and technical information about setting up devices, getting on to the video call, and audio/visual requirements. There was always a backup plan in case of technical difficulties and a plan to limit distractions (e.g., participating in the interview when the child slept or cared for by another family member).

After the interview, a native Spanish-speaking, bilingual Hispanic research assistant with a BS in Education transcribed the interviews in the language spoken by the parent (i.e., Spanish or English) before translating Spanish transcripts into English for coding. All translations were verified first by the second author, who has an MS in Speech-Language Pathology, and re-verified by the third author, who has a PhD in Communication Disorders. The second and third authors are native Spanish-speakers. Finally, we imported the finalized English transcripts into QDA Miner version 6 for coding.

A bilingual Hispanic research clinician with a MS in Speech-Language Pathology was the primary coder. The primary coder listened to the recorded interviews and coded the finalized transcripts for evidence of the eight intervention dimensions from Bernal et al.’s (1995) EV framework (Table 1) coding for the cultural values of familismo and respeto in the concept domain. The primary coder made several passes through the transcript and focused on the salient features of each code (Saldaña, 2016). Noteworthy, the codes were not mutually exclusive, therefore, some of the parents’ answers were coded for more than one cultural dimension. Next, the first author, who is monolingual English speaking, reviewed the coded transcripts and the two coders discussed coding agreements and discrepancies to ensure the coding reflected the criteria for each dimension of cultural sensitivity and values. No other reliability measures were obtained.

Results

Child and family characteristics are presented in Table 2. Effect size estimates suggest that more responders were monolingual Spanish speakers (medium effect), and as a group, they were less educated (medium effect) and less stressed (small effect) compared with non-responders. Further, the responders’ children had slightly higher ADOS-2 scores (small effect) than the children of non-responders. Regarding the social validity questionnaire, the responders rated their general experience with the intervention slightly higher than the non-responders (r = .30). The two groups, however, rated incorporating the intervention into daily life (r = .02), teaching other family members (r = .02), and the effects of the intervention on the child and family (r = .05) similarly. Descriptive statistics from the social-validity questionnaire (Table 4) suggest that parents’ perceptions of the intervention upon completing Pathways were highly positive. Ratings for the ease of incorporating the intervention in daily life (items 6–9) were relatively less favorable, with the lowest ratings on item 10 (I was able to teach other family members to use the strategies).

Table 4.

Social Validity Questionnaire Responses for Responders and Non-Responders

Item	Responders M (SD)	Non-responders M (SD)
1. Learning this intervention model was valuable to my family.	6.89 (0.33)	6.60 (0.55)
2. Using this intervention model was a positive experience for both my child and me.	6.78 (0.67)	6.60 (0.55)
3. I feel confident that the skills I learned will help me make a meaningful difference in my child’s development.	6.89 (0.33)	6.40 (0.89)
4. My family will continue to use this intervention model.	6.89 (0.33)	6.60 (0.55)
5. I would recommend this intervention model to other parents.	6.89 (0.33)	6.60 (0.55)
6. The intervention was easy to incorporate into family life.	6.33 (0.71)	5.80 (1.64)
7. I used this intervention model at home on a regular basis.	6.56 (0.73)	6.40 (0.89)
8. The intervention model was not complicated to learn.	6.11 (0.93)	5.80 (1.79)
9. The intervention model was easy to use.	6.33 (0.50)	5.80 (1.79)
10. I was able to teach other family members to use the strategies.	5.78 (1.30)	5.80 (1.09)
11. The intervention provided a positive change for my family.	6.89 (0.33)	6.40 (0.89)
12. I noticed meaningful increases in my child’s social interaction.	6.89 (0.33)	6.40 (0.89)
13. I noticed meaningful increases in my child’s eye contact.	6.78 (0.67)	6.60 (0.55)
14. I noticed meaningful increases in my child’s verbal interaction.	6.56 (0.27)	6.40 (0.89)
15. Other people noticed a significant positive change in my child.	6.67 (0.71)	6.00 (1.00)

Note. (a) general experience (Items 1–5), (b) ease of learning (Items 6–9), (c) ease of teaching family members (Item 10); and (d) efficacy of the intervention for the child and family (Items 11–15); Ratings: 1 = strongly disagree, 4 = neutral, 7 = strongly agree

Pathways’s current intervention practices related to the EV framework are found in Table 1. Findings from procedural coding of the semi-structured parent interviews using the eight EV intervention dimensions and the cultural values of familismo and respeto for analyses of the concept domain are as follows:

Context Dimension

Four parents (36.4%) mentioned that having the intervention delivered in the home was convenient and helped with child care issues. In addition, two parents (18%) noted that they could listen to the audio version while doing other things around the house.

Quote 1: “…so it was invaluable to have the visits at home. I found that super helpful. Yes, it’s very helpful and also the whole idea of not going to a place to get the therapy or do the therapy cuz scheduling and putting kids [in] a car seat, finding a place for the other 3 is a big headache, so It’s great.“ (#33).

Quote 2: “I have to be honest with you, I relied more on the audio readings of the binder than the binder itself, cuz I would get very busy. If I was confused about something I’d go back to the binder and double check it, but generally the recordings is what I used” (#33)

Methods Dimension

All parents spoke positively about the multimodal coaching methodology based on adult learning strategies and the effect on their learning (Table 3).

Language Dimension

Parents did not mention their perception of intervention visits and materials being in Spanish. However, Spanish-speaking parents described the materials as being beneficial. Specifically, seven parents (63.6%) said they referred to the program manual’s written and audio versions to reinforce their learning and clarify any confusion.

Quote 3: “Yo me ponía a leerlo y estudiarlo y cuando ya venía la otra semana, yo ya tenía idea de que era lo que íbamos a tratar, como yo tenía que trabajar con él, que tenía que hacer con él en las horas del baño, de la comida. Allí me venían muchas ideas y muchos tips.” (#152)

[I would make myself read it and study it, so when the next week came, I already had an idea of what we were going to try, how I was going to work with him, what I had to do with him for potty time and meal time. There were many ideas and tips in there.]

Person Dimension

Similarly, the parents did not mention the cultural or linguistic background of the bilingual interventionist. However, five parents (45.5%) noted having a positive experience with their interventionist, and one parent discussed issues around building trust.

Quote 4: “[Interventionist] fue bien linda con nosotros. Me tenía mucha paciencia. Me ayudó mucho porque en ese momento, como él estaba chiquito y estábamos empezando, yo estaba muy frustrada con lo del autismo.” (#48)

[[Interventionist] was wonderful with us. She had a lot of patience with me. This helped me a lot because at the time, since he was so little and we were just starting out, I was very frustrated with autism.]

Quote 5: “Era como tratando de formar la confianza y que él fuera tomando confianza también con [interventionist] pero [interventionist] se lo ganó increíble. Eso fue increíble porque él trabajaba. Si fue poco a poco. Todo fue poco a poco. Todo fue paso a paso y fue increíble la conexión que hubo entre ellos.” (#94)

[It was like trying to gain trust and that he had to gain trust with [interventionist] as well, but with [interventionist] she won him over. It was incredible because he worked with her. It was little by little, but the connection between them was incredible.]

Four parents (36.4%) expressed that learning from the interventionist (rather than the manual) was beneficial.

Quote 6: “[Interventionist] utilizaba sobre todo físicamente, no solamente el papel, porque le puedes decir a alguien ‘lee este papel’, pero si esa persona no está dispuesta hacerlo, ¿entonces cómo lo trabajas? [Interventionist] me lo enseñaba. Me enseñaba cómo trabajar esa estrategia, cómo hacer las cosas, cómo ganar su contacto visual, cómo ganar que él hablara un poco más, cómo llamar su atención. Yo aprendí muchas cosas con ella debido a coómo me las iba mostrando y dando el seguimiento de las estrategias que traía el libro.” (#94)

[[Interventionist] used, over everything, physical stuff, not just what was on paper, because you can tell someone to read what is on the paper, but if that person is not used to doing it, how are you supposed to work on that? [Interventionist] would teach me. She would teach me how to use the strategies, how to do things, how to get eye contact from him, how to get him to talk to me more, how to get his attention. I learned a lot of things from her, due to the fact that she would demonstrate the upcoming strategies that were in the binder to me.]

Metaphor Dimension

One parent (9%) noted that the bilingual interventionist collaborated with her to help reshape content to be culturally sensitive.

Quote 7: “Yo con ella [niña] cantaba, bailaba, y por ejemplo si era para mirar para que sus ojos se me enfocaran a mí, como contacto visual, se lo enseñé a [interventionista], le dije, ‘mira le estoy enseñando esta canción’ No me acuerdo cuál era pero así es.” (#104)

[With her [child] I would sing, dance, and for example if she would look, for her eyes to focus on me like eye contact, I would teach it to [interventionist]. I told her ‘look I’m showing her this song.’ I don’t remember which song it was, but that was it.]

Concepts Dimension

Ten parents (90.9%) conveyed that teaching intervention strategies to family members helped facilitate relationships within the family (including siblings, aunts, uncles, and cousins), thus fostering the value of familismo.

Quote 8: “lo que me gusta de este programa, puedes enseñar a otros cómo trabajar. Entonces eso también es bien importante porque no todos saben cómo trabajar o cómo dirigirse. Por ejemplo al caso de [child’s name], [las personas] no saben cómo dirigirse, entonces como que pierde la paciencia. Y cuando le dices, ‘no, mira hay que hacer así’ entonces es una manera de enseñar, ‘mira hay que practicar con ella’. O sea te dan una forma de como mostrarle a otros, como dirigirse. Eso también ayudo mucho porque le dices a otras personas, por ejemplo, a sus tíos, sus primos como dirigirse o como trabajar con ella y eso es una gran ventaja, porque no todos saben dirigirse a ella. Es una gran herramienta, sí.” (#64)

[What I like about this program, you can teach others how to work. That’s also very important because not everyone knows how to work or how to address others. The example, in (child’s name)’s case, [people] don’t know how to address her. So They lose their patience. And when you tell them, ‘no look, you have to do this’, then it’s a way of teaching, ‘look, you have to practice with her’. In other words, it gives a way of showing others, how to address. That also helped a lot because you tell other people, for example, their uncles, their cousins, how to address or how to work with her and that is a great advantage, because not everyone knows how to address her. It is a great tool, yes.]

Quote 9: “Nosotros somos una familia grande. Son aquí mis hijos y mi esposo y yo, pero también yo tengo mucha interacción con mis hermanas. Entonces cuando yo les platicaba a ellas en que estaba trabajando con él para cuando yo lo encargaba o cuando íbamos a su casa, ellas también pudieran trabajar con él en lo que yo estaba trabajando; y ahorita ya saben, como por ejemplo, si él quiere algo, como que les quedo también, como hay que interactuar con él o como hay que hacerle estrategias para que él ponga atención, para que las mire o para tranquilizarlo también.” (#48)

[We are a big family. My children, my husband, and I are here, but I also have a lot of interaction with my sisters, so when I told them that I was working with him for when I put them in charge of him or when we went to their house, they could also work with him on what that I was working on; and right now they already know, for example, if he wants something, they also know how to interact with him or how to work strategies for him to pay attention, to look at them, or to calm him down as well.]

In contrast, all the parents found intervention strategies requiring them to use wait time, follow their child’s lead, and limit demands contrary to the cultural value of respeto, making the intervention challenging to implement. In addition, four parents (36.4%) noted that the challenge extended to teaching family members.

Quote 10: “Sobre todo, hablar, porque estamos acostumbrados todos a dirigir. Todos siempre estamos esperando que alguien nos dirija. Entonces, el primito [le dice], ‘no así, no se hace esto, se hace’ entonces cuando [la mamá dice] ‘no, ella solita lo puede hacer. Mira, escucha o mira, vamos a observar’. Como que eso es lo más difícil para las personas, porque todos queremos dirigir, todos queremos señalar o dirigir a todos, y eso es lo más difícil porque hay que enseñar a que hay que aprender a observar y escuchar; o nada más observando, ella te va a ir diciendo, entonces como que eso es lo más difícil para todos, para niños y grandes.” (#64)

[Above all, talking, because we are all used to telling her what to do. We are all always waiting for someone to tell us what to do. So, the little cousin [tells her], ‘not like that, you don’t do this, you do’, so when [mom says] ‘she can do it by herself. Look, listen, or look, let’s observe.’ That is the most difficult for people because we all want to take control, we all want to show or take control of everything, and that is the most difficult because you have to teach that you have to learn to observe and listen; or just by observing she will tell you, so that this is the most difficult thing for all of us, for children and adults.]

Quote 11: “For sure with my husband. I still have to explain to my family members, to his mom or his dad, cuz they don’t understand it so well, but they do try, which is great, to accommodate and be a little bit more gentle. But for sure with my husband and me, it’s like now we’re at the same wavelength like, ‘okay this is what we’re doing. This is how we’re gonna handle this.’” (#153)

Despite the emic (heritage culture-bound) and etic (majority culture) conflict inherent with wait time, following the child’s lead, and limiting demands, eight parents (72.7%) remarked that they came to understand the importance of the etic strategies when interacting with their autistic child.

Quote 12: “Era bien difícil porque uno se acostumbra a dar órdenes, a decir, o ask, y me tocaba dejar que él tomara su decisión, que él pudiera decir y empezar una actividad. Y yo me tenía que quedar callada, pero era increíble porque él empezaba la actividad; él tomaba decisión, él decía ‘si quiero’ o ‘no quiero’, y mostraba el interés de querer hacer las cosas sin necesidad de que yo le dijera, ‘mira (nombre del niño) está pasando esto’; era bastante difícil, pero a la misma vez era muy emocionante porque miraba que él tomaba una decisión por sí mismo. So, ayuda mucho porque acostumbramos a decirles a los hijos, ‘haz esto, mira esto, ten esto’, entonces era bastante difícil, pero si ayudó bastante.” (#94)

[It was very difficult because one gets used to giving orders, to say, or to ask, and I had to let him make his decision, that he could say and start an activity. And I had to remain quiet, but it was incredible because he would start the activity; he would make the decision, he would say ‘I want to’, or ‘I don’t want to’, and he showed an interest in wanting to do things without needing me to tell him, ‘Look (child’s name) this is happening’; it was very difficult, but at the same time it was very rewarding because I would see that he would take the initiative for himself. So, that helps a lot, because we were used to telling the kids ‘Do this, look at this, take this’, so it was very hard, but it did help a lot.]

Quote 13: “Yo pensaba que hablándole más, ella iba responder más, pero no. Entonces aquí me enseñaron en Pathways que hay que darle el tiempo y que ella me vaya mostrando lo que le interesa a ella para yo interesarme después como lo hace ella, verdad? Y esa fue una meta que yo también trabaje conmigo, porque era siempre estarle diciendo todo lo que tenía que hacer, cuando tenía que yo aprender a escucharla a ella, a observarla, verdad? Eso fue muy importante, porque yo no lo sabía.” (#64).

[I thought that by talking to her more, she was going to respond more but no. So in Pathways they taught me that I have to give her time and that she will show me what interests her, so that I can become interested in how she does it, right? And that was a goal that I also worked on with myself, because I was always telling her everything she had to do, when I had to learn to listen to her, to observe her, right? That was very important, because I didn’t know it.]

Quote 14: “Como a verlo que él puede hacer todo como un niño, nomás hay que hacerlo de manera diferente. Si yo pensaba,  pues como él no habla, él no me capta, él no ponía atención pues entonces él no puede hacer las cosas que los demás niños pueden. El programa lo que me vino enseñar fue que si puede hacer todo igual, tomar turnos, seguir ordenes, imitar, seguir las instrucciones…y todo, pero lo va a aprender de diferente manera, y tengo que enseñárselo yo de diferente manera. Fue lo que me enseño el programa cómo yo enseñarle a él cómo hacer lo mismo que los (otros) niños sin frustrarme y pues más despacito pero que al final de cuenta si da resultado.”

[It helped me to see that he can do everything like any other child, you just must do it in a different way. Yes, I thought, because he does not speak, he does not get it, he did not pay attention, so then he cannot do the things that other children can do. The program taught me that he can do everything the same, take turns, follow orders, imitate, follow the instructions…and everything, but he will learn it in a different way, and I must teach it to him in a different way. The program showed me how I can teach him how to do the same things as the (other) children without getting frustrated and a little slower, but in the end it works.]

Discussion

A substantial body of research supports the use of parent mediated NDBIs to facilitate positive changes in core social and communication challenges of young autistic children which is not moderated by age, intervention intensity or autism symptomatology (Crank et al., 2021; Sanbank et al., 2020). Because parent-mediated NDBIs can incorporate intervention strategies into culturally and linguistically appropriate activities based on the family’s preferences, home values, and backgrounds they are a good candidate for implementing CLSI with families of young autistic children (Rollins et al., 2022). Unfortunately, there are very few culturally sensitive NDBI parent-mediated early autism interventions developed for or adapted for Hispanic families experiencing low income. Pathways parent-mediated NDBI was developed with stakeholders to improve IDEA Part C early intervention for young autistic children in Texas, where over half of the families identify as Hispanic/Latino (Texas Health and Human Services, n.d). Two recent RCTs found that Pathways improved core challenges experienced by autistic children (Rollins et al., 2021;  Rollins & De Froy, 2023), increased parent responsivity, and decreased parenting stress (Rollins et al., 2019) in culturally and economically diverse families, the majority of which were Hispanic families experiencing low income.

The purpose of this paper was to evaluate evidence of Pathways parent-mediated NDBI as a CLSI for young Hispanic autistic children and their families. We used Bernal et al.‘s (1995) EV framework to evaluate the ecological validity of existing Pathways practices and parents’ perceptions about the intervention obtained from a semi-structured interview that probed parents’ experiences with the program. Nineteen Hispanic parents who participated in a larger Pathways study (Rollins & De Froy, 2023) were contacted, and eleven parents agreed to be interviewed. Both responders and non-responders were generally positive about Pathways upon completing the intervention. However, both groups rated incorporating the intervention into daily life and teaching other family members to use strategies relatively lower than other items. Both items are pertinent to the cultural values of familismo and respeto.

A review of Pathways current practices through the lens of the EV framework (Table 1) suggests Pathways has many strengths regarding cultural sensitivity for Hispanic participants in the domains of context, methods, language, and persons. Many of these strengths were echoed by the parent in their interviews; however the findings would have been strengthened if grandparents and other extended family members had participated in interviews. The low-dose home visiting component alleviates the need for child-care and transportation (quote #1), the audio recordings enabled parents to listen to lessons while doing other things (quote #2), and all of the parents mentioned benefiting from the multimodal coaching methods (Table 3). Despite the manual being a Spanish translation and not an adaption, Spanish-speaking parents used the audio and written version of the manual to reinforce and clarify what they learned from the interventionist (quotes #3). With regards to the person dimension, bilingual interventionists delivered the intervention in Spanish, fine-tuning language and teaching modality to the family (quote #6) and adapting activities to include cultural metaphors (quote #7).

Within the concept dimension, parents were encouraged to teach intervention strategies to other family members, promoting the cultural value of familismo (quotes #8, #9). However, additional research is needed to identify if and how the intervention strengthened family connections. Pathways did less well balancing evidence-based NDBI intervention strategies for autistic children with the heritage value of respeto. Specifically, evidence-based etic (majority culture) intervention strategies requiring the parent to use wait time, follow the child’s lead, and limit demands are not congruent with emic (heritage cultural-bound) caregiving practices used to instill respeto. Recall that respeto emphasizes and expects obedience, good behavior, and deference of children to adults (Calzada et al., 2010). Emic practices around respeto involve the parents calmly asserting their authority and clearly communicating expectations and demands of their children (Tamis-LeMonda et al., 2020), which is not congruent with parents being asked to limit the demands set for their children or to follow the child’s lead. This emic-etic conflict made Pathways intervention strategies difficult to learn (quote #10) and challenging to teach other family members (quote #11) which may have negatively impacted familismo. Additionally, these etic strategies are taught to parents in the first two units of the Pathways program, potentially exacerbating cultural mistrust. Nevertheless, parents acknowledged the value of etic interactional strategies when engaging with their autistic children, primarily to facilitate shared interests (quotes #12, #13). Sharing interests with another person is a core social challenge for autistic children and is an important goal of many NDBI interventions for autistic children (Crank et al., 2021). Further, one parent indicated that etic practices lead to emic practices (quote #14) providing a potential culturally sensitive resolution to the conflict.

Plans are in place to work with our stakeholder group of community partners, parents, researchers, and the authors of the Pathways program to further develop the cultural and linguistic adaption of Pathways’s program and manual. For example, the manual might incorporate language that both acknowledges the emic-etic conflict around respeto and suggests ways to use etic strategies to create a bridge towards facilitating child affiliative obedience (i.e., respeto). Once the parent learns etic strategies to foster better interaction around activities motivating the child, they can choose these activities and slowly integrate emic practices. Other adaptions would include culturally appropriate metaphors around social routines and culturally empathetic artist renderings. Finally, the stakeholder group will work toward improving the content of the intervention (Table 1) by adding community resources and developing materials related to advocacy and empowerment. A limitation of this study was potential response bias. On average, the responders tended to have a more positive experience with the intervention than the non-responders, which may have inflated parents’ positive perception of the intervention. However, the semi-structured interview did not explore parents’ perception of the cultural and linguistic sensitivity of Pathways, potentially limiting bias. A second limitation is that while most families in this study experienced low income, several did not. Finally, we did not obtain reliability statistics on the coded transcripts. Measures of reliability improve confidence in the results by measuring the amount of error introduced in the data. Two coders may experience and interpret the phenomena of interest differently increasing error and diminishing the trustworthiness of the data. Instead, the primary and secondary coder reviewed all transcripts, discussed coding discrepancies, and reached a consensus. Despite these limitations, the current study suggests that Pathways has many strengths regarding cultural and linguistic sensitivity for Hispanic families with young autistic children; however, we will continue to make adaptations with our community partners to further strengthen Pathways as a CLSI.

Declarations

Ethical Approval

All procedures involving human participants were conducted in accordance with the ethical standards of the University of Texas at Dallas (IRB 18–149) and with the 1964 Declaration of Helsinki and its amendments.

Conflict of interest

Rollins has received research grants from the Texas Higher Education Coordinating Board’s (THECB) Autism Grant Program (THECB AGP 2018–2020 #20476, NCE #22842) and has received speaker honorariums for several speaking engagements. Rangel-Uribe’s salary is supported by THECB Autism Grants (Rollins, PI). A version of this manuscript was presented at the American Speech-Language-Hearing Association Convention in 2018.