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. Author manuscript; available in PMC: 2026 Aug 18.
Published in final edited form as: Res Autism. 2025 Jul 12;127:202658. doi: 10.1016/j.reia.2025.202658

Pilot study of a strengths-based education program for Diné (Navajo) families of autistic children: Feasibility, fidelity, acceptability, and initial outcomes

Olivia Lindly 1,*, Candi Running Bear 2, Davis E Henderson 3, Brianna R Kirby 1, Vernyllia Begay 1, Amy Shui 4, Sarah Dababnah 5,**, Sandy M Magaña 6,**
PMCID: PMC13480392  NIHMSID: NIHMS2200677  PMID: 42610064

Abstract

Purpose:

Culturally responsive, strengths-based parent education and training programs for Indigenous families of autistic children are needed to help optimize their health; however, few exist. Parents Taking Action, an evidence-based, parent education and training program delivered by community health workers (i.e., family advisors), was adapted for Diné (Navajo) families of autistic children ages 2 to 12 years (Diné PTA). We conducted a pilot study to examine the feasibility, fidelity, acceptability, and initial outcomes of Diné PTA.

Methods:

Using mixed methods, program feasibility was assessed from participant enrollment and lessons completed; program fidelity was captured using a structured checklist; and initial family and child outcomes were measured with a verbally administered survey at baseline, mid-way through the program, and following program completion. The program’s social validity and other aspects of its acceptability were assessed after program completion through the final survey, a virtual focus group with participants, and family advisor feedback. Paired t-tests with quantitative survey data and content analysis with qualitative data were performed.

Results:

Of the 13 Diné parents enrolled in the study, 10 completed all (n = 9) or some (n = 1) of the program. The program was delivered with high fidelity and had high acceptability for both participants and their family advisors. Participants demonstrated statistically significant improvements on the Family Outcomes Survey (e.g., understanding the child’s strengths, needs, and abilities) between baseline and program completion.

Conclusion:

Results suggest Diné PTA holds promise as a culturally responsive, strengths-based autism education and training program for Indigenous families.

Keywords: autism, children, Diné, Indigenous, Navajo, parent education and training, rural, southwest, United States

Autism is a developmental condition that includes challenges in social communication and repetitive behaviors, with symptoms appearing early in childhood (American Psychological Association, 2023). An autism diagnosis is often necessary for U.S. children and their families to access autism-specific services and supports (e.g., behavior therapy; Zuckerman, et al., 2015). Though racial and ethnic disparities in autism services access may have decreased for some groups (Maenner et al., 2023; Zeidan et al., 2022), reductions in these disparities have not been well established for Indigenous children including those who are Navajo (hereafter Diné, meaning “The People”). Moreover, little research has sought to understand how disparities in autism services access may be compounded for families at the intersection of Indigenous ethnicity, ruralness, and poverty (Aylward et al., 2021; Bishop-Fitzpatrick & Kind, 2017; withheld for peer-review).

Autism in the Navajo Nation

The Navajo Nation is in the southwestern United States spanning Arizona, New Mexico, and Utah (~ 27,000 square miles) and is the largest federated tribe both geographically and in population size (~332,389 citizens; 166,545 live in the Navajo Nation). Diné children may be at elevated risk for developmental delays, including autism, plausibly due to chemical exposures (e.g., uranium, arsenic) from mining and other aspects of the physical environment (Nozadi et al., 2022; Rennie et al., 2023). The neurodiversity paradigm sees neurological differences like autism, attention deficit hyperactivity disorder, and dyslexia as natural variations of the human mind, not problems to be fixed (Singer, 1999; Armstrong, 2010). This challenges the traditional medical model, which often views these differences as deficits (Walker, 2021). Neurodiversity supports helping individuals succeed as they are, not by changing them to fit a norm. Traditionally and in alignment with the neurodiversity paradigm (Dwyer, 2022), Diné families view autistic individuals as beautiful and those who help their family members to live in Hózhó (Kapp, 2011). Diné beliefs also teach that each person has a unique path and purpose, and all children are sacred, even if they think or behave differently. Diné healing honors the whole person—mind, body, spirit, and emotions (Benally, 1994; Bluehouse & Zion, 1993). When autistic individuals are supported in culturally respectful ways, balance and harmony can be maintained or restored.

Hózhó is a complex Navajo philosophical term that embeds Diné traditional teachings and sums to beauty (Kahn-John & Koithan, 2015). Hózhó emphasizes self-mastery by passionate and careful thought, speech, and behavior. Inversely, Hózhó cautions humans they can “self-terminate” by apathetic and careless thinking, speaking, and behavior. Hózhó encourages a long healthy life by maintaining a good and positive relationship by minding “one’s mind, soul, spirits, and life” (Kahn-John & Koithan, 2015). There is no word in the Navajo language for disability or autism. Family members typically make lifestyle changes to care for autistic children (Luther et al., 2005). Immediate and extended Diné families tend to live together to help share the role of caretakers for autistic individuals. Diné families often experience systemic challenges accessing services and supports to help their autistic children thrive (withheld for peer-review). Diné families have additionally voiced a need for increased autism awareness and culturally responsive, strengths-based parent support, education, and training programs to promote health in and around the Navajo Nation (withheld for peer-review).

Parents Taking Action Evidence Base and Cultural Adaptations

The strengths-based approach (SBA) focuses on what individuals and families already do well, rather than their weaknesses. SBA comes from psychology and social science concepts that highlight an individual’s ability to grow, use their strengths, and rely on family and cultural values for support (Saleebey, 2006; Rapp & Goscha, 2012; Weick et al., 1989). When the PTA program was adapted for Diné families, it focused on honoring what families already know and do to care for their autistic children. Important Diné values like Hózhó were included to support family and community wellness. The program respects Diné ways of learning, as well as using storytelling and oral traditions. It involves extended family members like grandparents, aunts, uncles, and siblings, showing the importance of kinship in Diné culture. Parents are seen as knowledgeable and strong, not just as individuals needing help. They are encouraged to lead and support others. The program also respects their strength in facing challenges like colonization, discrimination, and lack of resources. It works with tribal health workers, teachers, and traditional healers to make the support more trusted and meaningful. Families are invited to help shape how the program runs, so it matches their daily lives and ways of communicating. This creates a respectful and empowering experience for many Diné families.

Strengths-based autism education and training for parents and other family members can be helpful during and after the diagnostic process, especially when accessing culturally responsive autism services and supports is challenging where people live (Magaña et al., 2013). Understanding this, Magaña and colleagues (2017) developed the Parents Taking Action (PTA) program to better meet the needs of culturally and linguistically diverse families of autistic children, including those in rural areas with a limited supply of mental health professionals. PTA is a 12-lesson psychoeducational and skill-building program intentionally developed for and led by racially and ethnically minoritized parents of autistic children (peer interventionists). In this adaptation of PTA, the peer interventionists were referred to as family advisors. The original version of PTA focused on Latinx immigrant families in the U.S. using a rigorous culturally informed and community-engaged process (Magaña et al., 2017) guided by the Ecological Validity Framework (Bernal et al., 1995). Subsequent studies have taken similarly rigorous approaches to adapt PTA for other communities impacted by structural barriers to accessing autism services, including Black, Chinese, and Colombian parents, as well as low-resourced children and their families (Dababnah et al., 2021; Garcia Torres et al., 2023; Magaña et al., 2019; Xu et al., 2022). A multisite randomized controlled trial of PTA shows Latinx parents who received PTA had improved self-efficacy of and use of evidence-based practices along with positive change in child social communication and increased use of evidence-based services for their autistic children (Magaña et al., 2020).

Current Study

We examined the feasibility, fidelity, acceptability, and initial outcomes of the strengths-based Parents Taking Action (PTA) program adapted for Diné parents of autistic children ages 2–12 years (hereafter Diné PTA) through a pilot study. This study builds upon our team’s initial qualitative investigation to better understand the lived experiences of Diné parents who have a diagnosed autistic child (withheld for peer-review), along with our subsequent work to culturally adapt Parents Taking Action for Diné families in alignment with Diné views of autism that are consistent with the neurodiversity paradigm (withheld for peer-review). Given the dearth of strengths-based parent education and training programs specifically adapted and used with Indigenous communities, this study’s findings are intended to help improve and inform future Diné PTA delivery and expansion.

Methods

Design

We conducted a convergent mixed methods pilot study on Diné PTA from 2022 to 2024. In a convergent mixed methods design, quantitative and qualitative data are collected and analyzed concurrently, with the findings integrated during interpretation to provide a comprehensive and multidimensional understanding of the research problem (Creswell & Plano Clark, 2018). We collected quantitative and qualitative data concurrently throughout the program’s implementation. This study’s protocol was approved by the principal investigators’ Institutional Review Board and the Navajo Nation Human Research Review Board. Supporting resolutions for this project were obtained from each of the five Navajo Nation Agency Councils, as well as the Diné Department of Education, and Navajo Head Start. Other approvals to recruit participants were obtained, as required, by healthcare and education organizations in and around the Navajo Nation.

Community Involvement

A community advisory board (CAB) of 13 individuals including practitioners, researchers, and Diné parents of autistic children met regularly and provided input on the program including this study and its findings from winter 2021 to spring 2024. We recruited CAB members through our professional networks and community member referrals. In terms of positionality, this study’s authors bring an array of perspectives from their various identities and include individuals who identify as Diné, white, Latina, and other races or ethnicities, as well as neurodivergent, neurotypical, parents of autistic children, autism scholars, and/or autism practitioners who work with families who are Diné and/or other races or ethnicities.

Diné PTA Adaptation Overview

Because we previously detailed the adaptation of the PTA program for Diné parents of autistic children ages 2–12 years (withheld for peer-review), we provide a brief overview here. As part of the larger project, we initially conducted in-depth interviews with 15 Diné parents of autistic children ages 2–12 years from 2021 to 2022. We conducted these interviews to understand the lived experiences of Diné parents of autistic children broadly, but also their specific preferences for adapting PTA (e.g., who they would like to deliver the program, lesson topics they thought were important or could be combined). Along with parents’ preferences, we obtained input from the full CAB on the adaptation of PTA for Diné parents, including cross-cutting adaptations such as how much language should be translated, how to describe autism in the Navajo language, and the title for community health workers delivering the program. Further description and examples of the adaptations made have been provided previously (withheld for peer-review). In adapting the program, we also utilized our CAB and interview findings to ensure the materials were congruent with Diné perspectives on autism and strengths-based approaches to parent education and training more broadly.

Diné PTA Implementation

Following the processes used by Magaña and colleagues and others who have adapted the PTA program for various cultural groups (Dababnah et al., 2021; Magaña et al., 2019), several investigators underwent a train-the-trainer workshop to learn how to train parents of autistic children to deliver the PTA program. After the train-the-trainer workshop, the investigators facilitated a four-day training (~24 hours), split across two weekends, for five family advisors. This zoom training conducted in 2022, covered all content the family advisors would deliver to parents and other aspects of being a family advisor, such as completion of program fidelity checklists at each visit, maintaining safety and confidentiality, and timekeeping for payment. Guest speakers with certain topical expertise from our CAB (e.g., a school psychologist with expertise in educational autism assessment and individualized education programs) were integrated in the training. Family advisors were compensated for their training time and their time delivering the program.

We assigned participants to the family advisors considering their mutual meeting preferences (e.g., times available to meet) and the number of participants family advisors had availability to work with. The family advisors taught 12 lessons from the PTA program adapted for Diné families. These lessons covered topics such as child development including developmental milestones, autism characteristics, being an advocate in the school system, talking to others about autism, reducing stress, playing together and learning together, communication, addressing behaviors of concern, and looking ahead (Table 1 shows all lesson topics). Most lessons were scheduled weekly or biweekly with breaks for special events or other commitments. Each lesson typically lasted one to two hours and was conducted virtually or by telephone and one-to-one (one family advisor with one participant). The study team supported the family advisors through monthly virtual meetings, weekly check-ins and reminders, and continuous availability for questions and concerns.

Table 1.

Lesson topics covered in the Diné Parents Taking Action pilot study

Diné Parents Taking Action Lesson Order and Topics
(1) Understanding child development
(2) Understanding the autism spectrum and your child’s needs
(3) Play together, learn together
(4) Creating everyday opportunities to encourage communication
(5) Behavior is communication
(6 & 7) Responding appropriately to behaviors of concern
(8) Helping your child to make friends and interact with others
(9) What works to address the symptoms of autism?
(10) Stress & depression
(11) How to be an effective advocate in school and at home
(12) Building social support and looking ahead
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Participants

There were 13 parent participants in this pilot study. Recruitment occurred from June 2021 to June 2022. Most referrals came from CAB members (n = 8). One parent each (n = 6) was referred by a school district, Navajo Head Start, social media, Tuba City Regional Health Care, Chinle Indian Health Services, and the Navajo Birth Cohort. Thirteen Diné mothers of autistic children participated in the study; no other types of caretakers (e.g., fathers, grandfathers) were involved. Other participant characteristics are detailed in Table 2. Of the 13 participants, the number of participants involved in each study component is shown in Table 3. No participants were also family advisors in this study.

Table 2.

Diné Parents Taking Action Program Parent Participant Characteristics (N = 13)

Completers % or M (n) Non-completers % or M (n)
Relationship to the child with autism
 Mother 100 (9) 100 (4)
Gender
 Female 100 (9) 100 (4)
Age, years 39.1 (9) 35 (4)
Identifies as Diné 100 (9) 100 (4)
Verbal proficiency in the Diné language
 Poor or fair 88.9 (8) 75 (3)
 Good or excellent 11.1 (1) 25 (1)
Written proficiency in the Diné language
 Poor or fair 88.9 (8) 100 (4)
 Good or excellent 11.1 (1) 0
Location
 Northern Navajo Agency 11.1 (1) 25 (1)
 Eastern Navajo Agency 0 0
 Central Navajo Agency 22.2 (2) 25 (1)
 Fort Defiance Navajo Agency 11.1 (1) 0
 Western Navajo Agency 44.4 (4) 0
 Page/Phoenix/Glendale 22.2 (2) 25 (1)
Marital status
 Married, living with someone, or engaged 55.5 (5) 50 (2)
 Single or never married 22.2 (2) 0
 Separated or divorced 0 50 (2)
 Widowed 11.1 (1) 0
 Other 11.1 (1) 0
Highest level of education
 High school 66.6 (6) 25 (1)
 Some college 11.1 (1) 25 (1)
 Bachelor’s degree 11.1 (1) 25 (1)
 Master’s degree or doctorate 11.1 (1) 25 (1)
Employment status
 Employed full-time 33.3 (3) 50 (2)
 Employed part-time 0 25 (1)
 Not employed 66.6 (6) 25 (1)
Annual household income
 < $25,000 44.4 (4) 25 (1)
 $25,000-$39,999 22.2 (2) 0
 $40,000-$69,999 0 0
 ≥ $70,000 or more 22.2 (2) 50 (2)
 Did not know 11.1 (1) 25 (1)
Overall health status
 Poor 0 0
 Fair 33.3 (3) 75 (3)
 Good 55.5 (5) 25 (1)
 Excellent 11.1 (1) 0
Number of children with autism
 One child 100 (9) 100 (4)
Child Characteristics
Age, years 8.78 (9) 9.75 (4)
Gender
 Male 100 (9) 75 (3)
 Female 0 25 (1)
Identifies as Diné 100 (9) 100 (4)
Autism severity
 Mild 44.4 (4) 75 (3)
 Moderate or severe 44.4 (4) 0
Childhood Autism Rating Scale 2 32.3 27.3
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Note. Abbreviations: M, mean; SD, standard deviation.

*

Other tribes were Hopi or Sioux. In the Childhood Autism Rating Scale 2, the three possible severity groups included minimal-to-no symptoms of autism (scores 15–29), mild-to-moderate symptoms of autism (scores 30–36.5), and severe symptoms of autism (scores 37 and higher).

Table 3.

Number of participants who engaged in each study component

Diné Parents Taking Action study component Number of participants
Enrolled in the study 13
Completed some lessons 1
Completed all lessons 9
Completed the baseline survey 10
Completed the two follow-up surveys (i.e., midway through and following program completion) 9
Completed the Social Validity Questionnaire in the second follow-up survey, after program completion 8
Post-program focus group 3
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Measures

Program Feasibility

We used the number of participants enrolled, lessons completed, and surveys completed to assess feasibility. For participants who enrolled but did not complete any or all lessons, we documented any reasons they gave for not beginning or ceasing lessons and survey completion.

Program Fidelity

Per past PTA studies (Magaña et al., 2017), we assessed program delivery fidelity using a 16-item checklist about the activities completed for each lesson (e.g., “I reviewed objectives of the lesson”; checklist available upon request). Response options included, “I did this,” “I did not do this,” or “Not Applicable (N/A).” We computed scores by summing the number of items that were done and dividing by the total number of items that were not marked as not applicable (e.g., there were no homework assignments for the first lesson). We considered a score of 80 percent as high-fidelity program delivery.

Program Acceptability

We used the Social Validity Questionnaire, a PTA-specific questionnaire that has been used in prior PTA trials, to assess program acceptability (Magaña et al., 2017, 2020). The questionnaire includes 15-items about the acceptability of PTA intervention strategies (e.g., token economy, extinction). Items were rated on a six-point Likert-type scale from strongly disagree to strongly agree. We only included this questionnaire in the final follow-up survey. We examined individual item scores and total scale scores. We considered a score of five or six to indicate high acceptability for positively worded items and a score less than three to indicate high acceptability for the negatively worded items. We also included unstructured survey items about program acceptability in the final survey and conducted a focus group with participants once they completed the program. To determine program acceptability from the perspectives of family advisors, we asked a short series of questions during each monthly meeting with them (i.e., structured debriefs). Because the structured survey measures had not been previously tested in this population, we also gathered feedback on how participants viewed the survey measures. The questions used to assess program acceptability are provided as supplemental material.

Family and Child Outcome Measures

The baseline, mid-program, and post-program surveys included six measures of family and child outcomes used in prior PTA studies (Lopez et al., 2019; Magaña et al., 2020).

Family Outcomes Survey–Revised.

The Family Outcomes Survey-Revised (FOS) includes 24-items rated on a five-point Likert type response scale (not at all to completely) that captures information on family strengths and needs related to early intervention (Bailey et al., 2011). The five FOS subscales are (1) understanding your child’s strengths, (2) knowing your rights and advocating for your child, (3) helping your child develop and learn, (4) having support systems, and (5) accessing the community. We summed all items for a total score and the items for each subscale. Higher scores generally indicate greater strengths and support. Cronbach’s alphas for the present study were 0.96 (full scale), 0.90 (understanding your child’s strengths subscale), 0.91 (knowing your rights and advocating for your child subscale), 0.93 (helping your child develop and learn subscale), 0.83 (having support systems subscale), and 0.87 (accessing the community subscale).

Depressive Symptoms.

We measured parent depressive symptoms using the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977). The CES-D includes 20-items rated on a four-point Likert-type response scale (rarely to most of the time) about how often they felt or behaved in relation to depressive symptoms during the past week. Sample items include “I felt people disliked me” and “I cried a lot.” Four items need to be reverse scored before summing the total rating. A higher total score is indicative of more depressive symptoms, with a score of 16 or higher indicating clinical depression risk (Lewinsohn et al., 1997). The Cronbach’s alpha for the present study was 0.90.

Efficacy Using Intervention Strategies.

We used 10 items rated on a four-point Likert type scale (strongly disagree to strongly agree) created by the PTA developers to assess parent confidence using the strategies taught in PTA (Magaña et al., 2017). Sample items include “I feel confident setting the stage for learning for my child” and “I feel confident using social stories.” Items ratings were summed with higher total scores indicating greater self-efficacy using intervention strategies. The Cronbach’s alpha for the present study was 0.75.

Intervention Strategy Use.

We used 14 items rated on a four-point Likert type scale (never to always) about parents’ use of intervention strategies taught through PTA (Magaña et al., 2017). Sample items include “Follow your child’s lead in play” and “Teach your child new ways to communicate.” Item ratings were summed with higher scores indicating increased frequency of use. The Cronbach’s alpha for the present study was 0.87.

Autism Services Use.

As in prior PTA studies (Magaña et al., 2020), parents reported their use of 35 services and other treatments commonly used for autism (yes or no) including frequency (times per month) and duration (number of months). These included therapy services (e.g., occupational therapy), behavioral services and programs (e.g., applied behavior analysis), and complementary health approaches (e.g., dietary interventions).

Social Communication Questionnaire.

The Social Communication Questionnaire (SCQ) consists of 40 items (yes or no) and was used to help evaluate the communication skills and social functioning of children (Rutter et al., 2003). Parents respond to the SCQ items based on the child’s behavior over the past three months. Items rated as yes are summed for a total score. Scores above 15 suggest the individual is likely to have autism (Rutter et al., 2003). In this study, the Cronbach’s alpha was 0.88.

Procedure

Individuals interested in participating took a brief eligibility survey, and those eligible provided informed consent. Appointments were made for participants to complete the baseline survey. Before the participant’s contact information was provided to their family advisor, the study team made another appointment with the parents to conduct an observation for the Childhood Autism Rating Scale Second Edition (CARS-2; Schopler et al., 2010). The CARS-2 assessment was conducted by a trained study team member for eight of the 13 participants.

Family and child outcomes data were collected through a survey that was verbally administered to participants three times (baseline, midpoint, completion) by a trained study team member, with data entered in Research Electronic Data Capture (REDCap). The baseline survey included items on the demographic characteristics of each participant and their child with autism (Table 1), and the third survey (post-program completion) included the social validity questionnaire (Table 3) along with the unstructured items about program acceptability (supplemental material). Each survey also included unstructured questions about participants’ understanding and perceived relevance of the survey items. Surveys typically took one to two hours to complete. Participants received a gift card payment for each survey they completed.

A virtual focus group was facilitated by a Diné study team member who previously administered surveys and was familiar to the participants. All participants were invited to join the focus group upon completion of the program, and three volunteered to participate. A semi-structured interview protocol guided the discussion, which was audio recorded and transcribed via Zoom. Each participant received a gift card payment.

Program feasibility (participants enrollment, lessons completed) data were gathered by study team members throughout the project period. Program implementation fidelity data were collected by the family advisors delivering the program for each lesson and each participant. Family advisors completed fidelity checklists for each lesson they delivered with each participant. The family advisors additionally recorded one or two of the lessons they completed with each participant so the study team could then watch the recording and complete an “observer” fidelity checklist, which included the same items as the family advisor checklist. Program fidelity data were sent by the family advisors to study team members for entry into the REDCap database. Qualitative data about family advisors’ experiences delivering the program and its acceptability were also gathered monthly by a study team member during the virtual monthly check-in meetings with family advisors.

Analysis

Survey Data Analysis

We first computed descriptive statistics (e.g., frequencies, relative frequencies, means, standard deviations, medians, interquartile ranges) for all quantitative variables of interest. For the survey measures, we additionally examined variable distributional properties including skewness and kurtosis to determine appropriate subsequent statistical tests. Based on guidelines regarding skewness and kurtosis from Hair and colleagues (2010), we used one-tailed paired t-tests to examine change in survey measures between baseline and mid-program and between baseline and post-program (Hair et al., 2010). We calculated Cohen’s d for paired t-tests for effect sizes (Morris & DeShon, 2002). We used a conventional alpha level of 0.05 to determine statistical significance, a threshold of 0.60 to determine acceptable internal consistency reliability, and conventional Cohen’s d value ranges to interpret the magnitude of effect sizes (0.2 = small, 0.5 = medium, 0.8 = large; Cohen, 1988; Taber, 2018). We performed analyses in Stata 16.0.

Qualitative Data Analysis

Directed content analysis (Hsieh & Shannon, 2005) on data from and guided by the unstructured survey questions, focus group questions, and family advisor questions about program acceptability (supplemental material) was performed by two Diné study team members, including one who served as a family advisor. They initially identified themes and exemplar quotes. These were discussed and refined in collaboration with the larger study team.

Results Integration

To help explain quantitative results on program delivery fidelity from the fidelity checklists and program acceptability from the Social Validity Questionnaire, we connected our data using qualitative themes from the triangulated unstructured survey data, virtual participant focus group, and month family advisor meetings (Fetters, Curry, & Creswell, 2013). Study team members including a family advisor additionally examined the qualitative and quantitative results on the program’s feasibility, fidelity, and acceptability alongside one another to help understand the initial outcome results for participants and their children. Congruent as well as discrepant and unexpected findings were examined between the quantitative and qualitative results (e.g., comparing participant and family advisor data on program acceptability). To mitigate potential bias in family advisor reported data, the data from the structured debriefs with family advisors on program acceptability were additionally triangulated with the unstructured survey data, and virtual participant focus group data to ensure consistency across multiple sources.

Results

Feasibility Results

Of the 13 participants enrolled, 10 (77%) completed all or some lessons and nine (69%) completed all 12 lessons and the three surveys. One participant completed seven lessons and the baseline survey but neither of the two follow-up surveys. Three participants completed the baseline survey but did not complete any lessons. Reasons participants gave for not beginning or ceasing the lessons included the death of a spouse or being too busy or overwhelmed to commit to the program.

Fidelity Results

Overall, the family advisors reported consistently high fidelity across the lessons for each participant. Fidelity data were collected using a standardized checklist that family advisors completed after each lesson. Of the 110 lessons delivered, 109 achieved 100% fidelity. One lesson titled, “Understanding the Autism Spectrum and Your Child’s Needs” scored 86%, still meeting the high-fidelity threshold (> 80%). The lower score was attributed to the family advisor not effectively redirecting the participant’s attention back to the lesson when they deviated from the topic. Independently, study team members also observed subsamples of lessons which demonstrated similarly high fidelity, ranging from 82 to 100 percent.

Acceptability Results

Social Validity Questionnaire Results.

Table 4 presents findings from the social validity questionnaire. All parents strongly agreed that Diné PTA provided acceptable intervention strategies. Parents indicated they were willing to implement the strategies and found the required time commitment acceptable. Areas of lower agreement included having other people in the household help carry out the strategies, perceiving disadvantages to using the strategies, and possible disruption caused by using the strategies.

Table 4.

Diné Parents Taking Action Social Validity Questionnaire Results (N = 8)

Item M (SD) Range
1. Acceptable Intervention Strategy 5.75 (0.46) 5–6
2. Willingness to Carry Out Strategies 6 (0) 6
3. There are Disadvantages to the Intervention Strategies 2.38 (1.92) 1–5
4. Amount of Time Needed to Implement Intervention Strategies Is Acceptable 6 (0) 6
5. Confident Intervention Strategies will be Effective for my Child 5.75 (0.46) 5–6
6. Intervention Strategies Produce Permanent Improvements in Child’s Behaviors 6 (0) 6
7. Will be Disruptive to Our Home Life to Carry Out Intervention Strategies 2.25 (2.3) 1–6
8. Like the Procedures Used in Intervention Strategies 6 (0) 6
9. Other People in Household like to Help Carry Out these Intervention Strategies 4.5 (2.27) 1–6
10. There will be Undesirable Secondary Effects when Using Intervention Strategies 2 (1.77) 1–6
11. Child will Experience Discomfort During These Intervention Strategies 1.88 (1.36) 1–6
12. Willing to Change Routine in Order to Carry Out Intervention Strategies 5.5 (0.53) 5–6
13. Intervention Strategies Fit in Actual Routine 5.75 (0.46) 5–6
14. Intervention Strategies Will Teach Child Appropriate Behavior 5.88 (0.35) 5–6
15. The Goal of Interventions Fit with Parent Goals to Improve Child’s Behavior 6 (0) 6
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Note. The Social Validity Questionnaire items were rated on a six-point scale from 1 (strongly disagree) to 6 (strongly agree). For items 3, 7, 10, and 11, a lower score indicated greater social validity.

Acceptability Results from the Unstructured Survey Items.

Open-ended survey responses revealed that participants appreciated both the connection they made with their family advisor and learning the manual content. Participants consistently reported that the program was beneficial (e.g., better understanding of autism resources and the functional behavior assessment). All participants said they would recommend the program to others. Recommendations for improvement included expanding the program’s reach and addressing internet connectivity issues. Some participants also suggested opportunities for shared meals or group-based activities (e.g., writing social stories).

Participant Focus Group Acceptability Results.

Three participants took part in a virtual focus group led by a familiar study team member. Focus group participants expressed appreciation for the program’s content and the sense of community it fostered. One participant stated:

“I wasn’t feeling alone. I learned a lot with [family advisor’s name] and you know having that sense of feeling not alone and seeing what other people were going through, a lot of what I was going through and a lot of stuff that I learned I could navigate through IEPs, doctors’ appointments, and reaching out to resources that could help me and that was the biggest help through this program.”

Participants had no critiques of lesson order or content (e.g., key terms, videos, home activities). Two participants expressed, the lesson on advocacy and special education services ran longer than expected. All participants supported keeping all lessons and suggested adding new topics, such as navigating feeding issues and food sensitivities. Two participants recommended integrating a list of autism resources into the manual for discussion and review during a lesson.

Family Advisor Acceptability Results.

Family advisor feedback was collected each month through structured debriefs with study team members. Family advisors consistently reported that participants were engaged and interested in the materials, relaying that one participant shared program strategies with their child’s pediatrician. Family advisors highlighted that participants appreciated learning from another parent who could relate to their lived experiences. The family advisors commonly found it helpful to schedule the lessons at times that fit their own and the participants’ schedules. However, challenges included scheduling, particularly when participants did not show up for scheduled meeting times. Family advisors reported frequent communication improved coordination. Also, during lessons, family advisors reported confusion often arose when participants read parts from the family advisor manual that were not in the participant manual. In addition, family advisors expressed that some words in the participant manual were too complex for participants to understand. Family advisors repeated definitions, simplified the language and definitions, and/or looked up definitions online with participants to aide understanding. Family advisors also observed that participant comprehension varied, which they linked to differences in participants’ educational backgrounds. Technology and lack of in-person interaction were additional barriers family advisors frequently described.

Survey Acceptability Feedback.

Participant feedback from the baseline and mid-program surveys highlighted several areas for improvement. Two participants were unfamiliar with services referenced (e.g., hippotherapy). Another participant expressed that their child withdrew at community gatherings, suggesting that more culturally responsive questions about child behavior would have been helpful. One participant indicated that a question about facial expressions from the SCQ was difficult to answer because their child completely avoids eye contact. Another suggested that child-focused questions would be easier to answer if they were all oriented toward non-verbal children. A recommendation was also made to use gender-neutral pronouns (they/them) in survey language.

Initial Family and Child Outcomes Results

All family and child outcome results are shown in Table 4. Between baseline and program completion, participants demonstrated statistically significant gains on the Family Outcomes Survey-Revised (baseline M = 95.38, SD = 20.94 and program completion M = 106.22, SD = 12.06, t(8) = − 2.02, p = 0.04). Specifically, improvements between baseline and program completion for the following three subscales were found: understanding the child’s strengths, needs, and abilities; knowing your rights and advocating for your child; and having support systems. Use of evidence-based strategies also increased between baseline (M = 44.08, SD = 7.79) and program completion (M = 49.0, SD = 4.30, t(8) = −1.83, p = 0.05). Other outcomes followed the expected direction of change (e.g., parent depressive symptoms decreased between baseline and program completion); however, no other changes in outcomes were statistically significant. Effect sizes for statistically significant changes ranged from moderate to strong.

Discussion

This is one of the first studies to examine the use of a strengths-based parent education and training program for children with autism in an Indigenous community – specifically, we examined the feasibility, fidelity, acceptability, and initial outcomes of the PTA program adapted with and for Diné parents of autistic children ages 2–12 years. Findings support and advance the existing evidence base on PTA insofar as this is the first study of PTA adapted for Diné families of children with autism. This study’s results suggest that Diné PTA is feasible and can be delivered with high fidelity. Moreover, Diné PTA acceptability results demonstrated participants were willing to utilize program strategies (e.g., priming, use of visual schedules) and initial outcomes suggest an increase in participants’ use of these strategies between baseline and program completion. We found the strongest and most immediate changes related to family outcomes regarding participants’ understanding of their autistic child’s needs, rights and advocacy, and support systems. Moving forward, the program is addressing issues raised by participants about the program’s acceptability, such as ensuring better connectivity for telehealth-based program delivery (e.g., increased use of hotspots for participants and family advisors), inclusion of additional lesson content (e.g., addressing feeding and food sensitivities), providing opportunities to meet with other families that have an autistic child, simplifying certain parts of the survey (e.g., service use items), and removing or changing certain measures related to child communication and behavior so they are more inclusive (e.g., better account for children who are non-verbal).

Other PTA programs have been adapted for and delivered to other racially and/or ethnically minoritized communities including Black, Latino, and Chinese families (Dababnah et al., 2021; Garcia Torres et al., 2023; Magaña et al., 2017; Xu et al., 2022). Congruent with this study’s findings, prior PTA studies have demonstrated high feasibility and acceptability in addition to significant improvement in certain family and child outcomes (Dababnah et al., 2022, 2023; Garcia Torres et al., 2023; Lopez et al., 2019; Magaña et al., 2020). For example, one recent study of PTA adapted for parents of Black autistic children by Dababnah and colleagues (2022) similarly found statistically significant improvements in one of the Family Outcomes Survey subscales (i.e., knowing your rights and advocating for child). Other past studies of PTA– particularly for Latina mothers of children with autism–have utilized more rigorous study designs such as randomized controlled trials and found significant improvements in a number of parent and child outcomes that we did not find in this study (Lopez et al., 2019; Magaña et al., 2020). For example, a waitlist randomized controlled group trial by Lopez and colleagues (2019) found that scores on each Family Outcomes Survey subscale had positively increased, in addition to parent depressive symptoms decreasing from baseline to program completion. Pei-Lung Yu and colleagues (2024) also found that PTA delivered among Latina mothers significantly decreased their depressive symptoms between baseline and program completion and that these effects were sustained four months following program completion (Yu et al., 2024). Contrary to other PTA studies (Lopez et al., 2019), this study did not demonstrate significant change in the child outcomes assessed. This may be due in part to the lack of acceptability and/or small sample size. For these reasons, future work will endeavor to use other and more culturally responsive child outcome measures.

In response to this study’s findings, we made the following program updates before and while implementing Diné PTA on a larger scale beginning in fall 2024: [1] lowering the text reading level to be at an 8th grade level in the manuals used by family advisors and participants; [2] more closely aligning the participant and family advisor manuals in terms of content; [3] providing monthly in-person and online autism informational and community-building meetings based at Tuba City Regional Health Care Corporation which is in the Navajo Nation and has an autism assessment clinic, [4] offering in-person lessons for those participants who are located in close geographic proximity to their family advisor; [5] providing a larger number of hotspots to family advisors and participants; [6] loaning families augmentative and alternative communication (AAC) devices in consultation with a speech and language pathologist if a child might benefit from home-based AAC device use; and [7] revising the evaluation survey to simplify certain measures (e.g., service use) and replace certain measures participants in this study expressed challenges with. To more rigorously test this extension of Diné PTA and provide more robust evidence on its effectiveness, we are currently implementing a waitlist randomized-controlled group trial with a larger number of participants. Last, through this program extension, we are working with an autism assessment clinic in the Navajo Nation to determine approaches for embedding PTA and other services and supports for families undergoing the diagnostic process or who have a recently diagnosed child in the health system.

Strengths and Limitations

A key strength of Diné PTA is its cultural responsiveness, tailored to Diné values and needs using a community-engaged process (withheld for peer-review). This, in turn, helped ensure that the material was more acceptable to and useful for Diné parents. This inclusion of local knowledge and collaboration enhanced the program’s feasibility and acceptability. Additionally, this program addressed a crucial need within the Diné community by providing a culturally adapted program for families who are typically underserved. This study builds on prior research showing the adaptability of the original PTA program. Moreover, the strategies taught in this program are practical, allowing for the program material to be easily integrated into daily life. This was reflected by the high program acceptability scores in terms of participants’ willingness to carry out strategies and their confidence in the intervention’s effectiveness. A notable limitation of this study was its design in terms of no comparison group and a small sample size. This limits the generalizability of our results, making it difficult to determine whether the outcomes would remain consistent across a larger sample of Diné families that have an autistic child. In addition, small sample size may have contributed to our limited ability to see any significant change in certain initial outcome measures due to an increased likelihood of type 2 error. We indeed experienced setbacks enrolling participants during the COVID-19 pandemic, which overlapped with this study, and resulted in having a smaller than expected sample size. Another limitation is that the structured survey measures do not have established validity and reliability with Indigenous populations, and we were unable to examine the psychometric properties of these measures given our small sample size. Future research in this area is therefore needed. Despite these challenges, this study supports the results of previous PTA studies by suggesting the promise of PTA for Diné families, which are an understudied population in the autism research.

Conclusion

This was the first study of an autism-focused, strengths-based parent education and training program adapted for Diné families. We found that the PTA program adapted for Diné families of autistic children had reasonable feasibility, high fidelity and acceptability, and promising initial family outcomes. We identified and are addressing areas for program improvement in a larger-scale delivery of Diné PTA through a randomized wait-list control group trial in partnership with an autism assessment clinic based in the Navajo Nation. Our hope is that this collective, community-engaged work will inform future autism education and training programs for Indigenous communities more broadly and help to promote health within a neurodiversity paradigm for autistic children and their families.

Supplementary Material

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Table 5.

Diné Parents Taking Action Pilot Trial Initial Family and Child Outcomes

Baseline (N=13) Midpoint (n=9) Completion (n=9) Baseline to Midpoint Baseline to Completion
M (SD) M (SD) M (SD) t p d t p d
Family
Family Outcomes Survey (FOS) Revised Total (∝=0.96) 95.38 (20.94) 100.78 (14.89) 106.22 (12.06) −1.15 0.14 0.43 −2.02 0.04 0.83
 FOS Subscale: Understanding child’s strengths, needs, & abilities (∝=0.90) 17 (3.34) 17.44 (2.55) 18.44 (1.59) −0.40 0.35 0.14 −1.46 0.09 0.67
 FOS Subscale: Knowing your rights and advocating for your child (∝=0.91) 17.08 (6.08) 19.89 (3.59) 21.22 (2.91) −3.49 0.004 1.52 −4.27 0.001 2.18
 FOS Subscale: Helping your child develop and learn (∝=0.93) 16.69 (4.21) 18.11 (2.20) 18.0 (2.0) −1.33 0.11 0.71 −1.06 0.16 0.50
 FOS Subscale: Having support systems (∝=0.83) 19.54 (5.46) 20.44 (4.07) 22.33 (3.16) −0.66 0.26 0.22 −1.94 0.04 0.70
Depressive symptoms (∝=0.90) 18.31 (11.46) 17.67 (11.73) 16.56 (8.96) 0.03 0.51 0.01 0.27 0.40 0.09
Self-efficacy in use of strategies (∝=0.75) 36.85 (5.0) 38.56 (4.33) 38.33 (5.27) −1.58 0.08 0.53 −1.23 0.13 0.41
Use of strategies (∝=0.87) 44.08 (7.79) 46.89 (5.33) 49 (4.30) −0.90 0.20 0.32 −1.83 0.05 0.70
Child
Number of services currently used 3.31 (1.70) 3 (1) 4 (1) 0.56 0.70 0.19 −1.25 0.12 0.53
Social Communication (∝=0.88) 18.85 (5.71) 17.44 (6.91) 16.33 (8.60) 1.27 0.88 0.45 1.44 0.91 0.56
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Note. Because all variables were approximately normally distributed, paired t-tests were used and Cohen’s d was computed. One-sided hypothesis tests were used. M, mean; SD, standard deviation.

Acknowledgments

We would like to acknowledge the guidance and support of our larger project’s Community Advisory Board that was or continues to be composed of the following individuals: Vernyllia Begay, Trudy Billy, Sara Clancey, Sarah Dababnah, Joe Donaldson, Holly Figueroa, Rachel Homer, Kelly Lalan, Sara Nozadi, Sandra Magaña, Brian Van Meerten, Nicole Rambeau, Maraget Ray, Maureen Russell, Nelvin Tohonnie, Christina Vining, Summer Weeks, and Effie Welch. We would also like to acknowledge Julius Tulley as our project’s interpreter, Dr. Kristina Lopez for her invaluable consultation, as well as Anna Leaf and Erin Hill for their assistance with data collection.

Funding statement

This research received funding from the Southwest Health Equity Research Collaborative at Northern Arizona University (U54MD012388), which is sponsored by the National Institute on Minority Health and Health Disparities (NIMHD). This research was also funded by the Organization for Autism Research through an Applied Research Competition Grant awarded in 2020. Additional financial support was provided by Mercy C.A.R.E.S., a community reinvestment program within Mercy Care that funds and partners with projects that support advancement in health equity.

Footnotes

We have no known conflict of interest to disclose.

Declaration of conflicting interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Ethical considerations

The studies involving humans were approved by the Northern Arizona University Institutional Review Board (#1620944) and the Navajo Nation Human Research Review Board (NNR #20–389). The studies were conducted in accordance with the local legislation and institutional requirements.

Consent to participate

The ethics committee/institutional review board waived the requirement of written informed consent for participation from the participants or the participants’ legal guardians/next of kin because this research was minimal risk, and verbal consent reduced the risk of breach of confidentiality.

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

Data Availability

The datasets presented in this article are not readily available because in accordance with tribal sovereignty, any data connected with this study that are identifiable data from tribal members can only be shared with appropriate tribal policies and permissions. Should other researchers wish to use these data at a future time for reanalysis or to explore additional hypotheses, they would need to request access to the data through application to the Navajo Nation Human Research Review Board, and their proposal would need to meet the guidelines for research in accordance with tribal policy. Requests to access the datasets should be directed to mrwinney@navajo-nsn.gov.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

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NIHMS2200677-supplement-1.docx (19.6KB, docx)

Data Availability Statement

The datasets presented in this article are not readily available because in accordance with tribal sovereignty, any data connected with this study that are identifiable data from tribal members can only be shared with appropriate tribal policies and permissions. Should other researchers wish to use these data at a future time for reanalysis or to explore additional hypotheses, they would need to request access to the data through application to the Navajo Nation Human Research Review Board, and their proposal would need to meet the guidelines for research in accordance with tribal policy. Requests to access the datasets should be directed to mrwinney@navajo-nsn.gov.

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