Improving the cultural responsiveness of measures for Latino families of children with autism

Abstract

Purpose:

Increasingly, interventions are being developed and tested with families of color, including Latino families of transition-aged youth with autism. However, without culturally responsive measures, it is difficult to determine whether an intervention is effective. The purpose of this study was to improve the cultural responsiveness of measures related to: knowledge of adult disability services, advocacy, and family empowerment.

Methods:

Altogether, 30 Latinx parents of youth with autism participated in this study. Participants completed surveys and interviews to inform changes to the measures.

Results:

Changes were made in relation to: wording, format, and concepts. The revised measures were demonstrated to have high reliability.

Conclusion:

Implications for future research and practice are discussed.

To determine whether an intervention is effective, it is critical to have sensitive and accurate outcome measures. For individuals with intellectual and developmental disabilities (IDD, including autism) and their families, most interventions and related measures reflect culture-free knowledge instead of situated knowledge within cultures (Bal & Trainor, 2016). Further, few interventions have been tested with racial and ethnic minority families (West et al., 2016). Yet, when interventions and related measures are culturally adapted (versus are not adapted), they are significantly more effective and accurate (Cardona et al., 2012).

Consider Latino families of individuals with autism. In Latino culture, constructs may have different meanings (Magaña et al., 2000). For example, “advocacy” does not have a direct translation in Spanish. Advocacy should be situated within cultural beliefs (Cohen, 2013). Instead of framing advocacy as a way to achieve independence for the youth, it may be appropriate to focus advocacy as a means for being bien educado (i.e., the child should display appropriate behavior, Reese et al., 1995). Given the increasing prevalence of autism among Latino children (Zablotsky et al., 2019), it is important to develop and test interventions that support Latino families of individuals with autism. To ensure such interventions are effective, there is a need for culturally adapted measures for Latino families of individuals with autism.

To date, there have been several interventions for Latino families of individuals with autism. Such programs may improve parent: advocacy (Burke et al., 2016; Rios & Aleman-Tovar, 2021), knowledge (Luelmo et al., 2021), and/or empowerment (Magaña et al., 2017). The constructs of advocacy, knowledge, and empowerment have been demonstrated to increase service access for individuals with autism (Burke et al., 2020; Taylor et al., 2017). Improving service access is critical among Latino families as Latino (versus White) families are significantly more likely to face systemic barriers (e.g., language, citizenship) in accessing services (Magaña et al., 2015). To ensure that interventions effectively improve outcomes for Latino families, the measures must appropriately reflect their intended constructs. To this end, the purpose of this study was to culturally adapt advocacy, empowerment, and knowledge measures for Latino families of individuals with autism.

Advocacy can be defined as speaking or acting on behalf of oneself or another person. While advocacy is a common expectation among parents of individuals with autism (Rossetti et al., 2020), advocacy may have a different tone among Latino families. Latino parents of individuals with IDD, including autism, have reported that advocacy feels like a ‘fight’ or ‘struggle’ rather than a right (Montelongo, 2015). In a seminal study about parent advocacy among Latina mothers of transition-aged youth with IDD, including autism, participants characterized their advocacy as ‘alienated’ given their tremendous struggles in accessing services for their children (p. 37, Shapiro et al., 2014). Given the potentially different tone of advocacy among Latino families, it is important to ensure that an advocacy measure accurately reflects the advocacy activities as well as advocacy skills of Latino families.

Knowledge also seems critical to accessing services for individuals with autism. Extant knowledge measures vary dramatically. Some knowledge measures use dichotomous questions about special education law (e.g., true/false questions Lo, 2005; yes/no questions, Plunge & Kratochwill, 1995). However, a problem with dichotomous questions is that it elevates the risk of guessing the correct answer. Other knowledge measures ask about a participant’s perception of their special education knowledge (e.g., perceived knowledge about special education rights, Magaña et al., 2017). A limitation of perception of knowledge is that an individual may not know what they do not know thereby potentially inflating the knowledge score. Measuring knowledge is important when considering Latino families. Compared to White families, Latino families of children with autism report having less special education knowledge (Burke et al., 2020). Yet, none of the extant knowledge measures have been validated among Latino families. It is important to ensure that the knowledge items have the same meaning in Latino culture before inferring the extant knowledge among Latino families.

In comparison to advocacy and knowledge, there is more research about empowerment among families of children with autism. Often characterized by three levels, empowerment includes: one’s feelings of personal power and self-efficacy (individual), one’s ability to influence others (peer), and one’s concern with social action and change in society (political; Guetierrez & Ortega, 1991). Building on this definition, Koren and colleagues (1992) developed the Family Empowerment Scale (FES) which measures empowerment in relation to: family, the service system, and the larger community/political environment. The FES has been cited nearly 1,000 times and used within the context of Latino families of individuals with autism (e.g., Burke et al., 2016; Luelmo et al., 2020). However, there is a tension between empowerment and Latino culture as empowerment should not focus on the individual gaining power but rather on the structures that disempowered the individual to begin with (McLendon et al., 2012). Given this tension, it is important to examine the construct of empowerment among Latino families.

Compared to White families of individuals with autism, Latino families often face greater and unique systemic barriers resulting in poorer outcomes for individuals with autism and their family members (Buren et al., 2020). Recently, parent interventions directed toward Latino families have become more common (Rios & Burke, 2021). Such interventions often target traits (i.e., advocacy, knowledge, and empowerment) to improve service access among Latino families (e.g., Burke et al., 2016; Luelmo et al., 2021; Rios et al., 2020). Yet, none of the measures of these constructs have been validated with Latino families. To ensure that the measures are culturally responsive, it is critical to garner feedback from Latino families. To this end, this study had two research questions: With respect to measures of advocacy, knowledge and empowerment: (1) what changes are needed for the measures to be culturally responsive for Latinx families?; (2) are the revised measures reliable?

Method

Research Design

To adapt the measures related to advocacy, knowledge, and empowerment, we used the 12-step, cross-cultural adaptation process (Gjersing et al., 2010). The twelve steps include: (1) investigating conceptual and item equivalence; (2) translating the original measure; (3) reviewing the translated measure; (4) back translating the measure; (5) reviewing the back-translated measure; (6) having experts review the measure; (7) pretesting the measure; (8) revising the measure; (9) investigating operational equivalence; (10) piloting the measure; (11) conducting reliability analyses; and (12) having a final measure. In our preliminary studies (e.g., Author, 2016; Author, 2020), we conducted the initial six steps. Thus, for this study, we had measures that were forwarded and back translated as well as reviewed and approved by five experts in the field. For this study, we focused on the latter six steps.

Participants

As suggested by the cross-cultural adaptation process (Gjersing et al., 2010), we had 30 participants for this study. Specifically, 15 of the participants spoke English and 15 of the participants spoke Spanish. In this way, we could receive sufficient feedback about the measures in English and Spanish. To be included in the study, participants needed to: have a child with autism and identify as Latino. To screen whether the child had autism, the participants completed the Social Communication Questionnaire (SCQ, Rutter et al., 2003). All participants had children demonstrating lifetime scores for meeting the criteria for autism. Participants were, on average, 50.14 years of age (SD = 10.54, ranging from 34 to 71). The majority of participants was mothers. Participants represented diverse educational backgrounds ranging from some high school to graduate school; participant incomes also ranged from less than $15,000 a year to over $100,000 a year. Most participants reported Mexican heritages. With respect to the children of the participants, most were male. On average, the children with autism were 18.41 years of age (SD = 7.56, ranging from 5-29). See Table 1.

Table 1.

Participant Demographics (N = 30)

Characteristic	% (n)
Gender: Female	86.67% (26)
Marital Status: Married	60% (18)
Educational Background
Some high school	20% (6)
High school degree	20% (6)
Some college	13.33% (4)
College degree	16.67% (5)
Graduate school	16.67% (5)
Missing	13.33% (4)
Annual Household Income
Less than $15,000	10.0% (3)
$15-29,999	16.67% (5)
$30-49,999	13.33% (4)
$50-69,999	23.33% (7)
$70-99,999	13.33% (4)
More than $100,000	6.67% (2)
Missing	16.67% (5)
Ethnicity
Mexican	70% (21)
South American	13.33% (4)
Puerto Rican	6.67% (2)
Central American	3.33% (1)
Missing	6.67% (2)
Language
Solely speaks in Spanish	16.67% (5)
Speaks Spanish better than English	46.67% (14)
Speaks Spanish and English equally	16.67% (5)
Speaks English better than Spanish	10.0% (3)
Solely speaks in English	3.33% (1)
Child gender: Male	70% (21)
Child Co-Occurring Disabilities
Intellectual disability	23.33% (7)
Visual impairment	3.33% (1)
Orthopedic disability	3.33% (1)

Recruitment

Participants were recruited in varied ways. We created a recruitment flyer for this project. The flyer was available in English and Spanish. We shared the flyer electronically with parent support groups and disability agencies that served Latino families of youth with autism. We encouraged the groups and agencies to share the flyer with their constituencies via social media, emails, hard copy, and/or word-of-mouth. Each participant received a $25 gift card for completing the first interview and another $25 gift card for completing the second interview.

Procedures

First, we received Institutional Review Board approval for this project. Upon being interested in the project, an interested individual contacted the research team. The individual was screened to determine whether they met the inclusionary criteria. If the individual met the inclusionary criteria, we provided an overview of the project with them, and the individual provided informed consent to participate in the study.

After providing informed consent, we emailed each participant the measures and scheduled a phone or zoom interview with each participant. For participants who spoke English, we shared the English version; for participants who spoke Spanish, we shared the Spanish version. Notably, some participants requested to see both versions, so we sent both language versions. Thus, prior to the interview, the participants were able to review the measures and identify items that may need changes for the measure to be more culturally responsive.

During the phone or zoom interview, we conducted a cognitive interview with the participant to examine the understanding, acceptability, and impact of each item. Specifically, we pre-tested the measures with each participant, individually, to discuss their feedback on each measure. The interviews were conducted in the preferred language of the participant (i.e., 15 of the meetings were conducted in Spanish and 15 were conducted in English). During the interview, we reviewed each scaled measure and then each individual item. For each item, we asked “Is there a problem with this item?”. If the answer was “yes”, we asked “Why is there a problem?” and “How can we fix this problem?”. All interviews were recorded and transcribed. On average, each interview was 47.73 minutes (ranging from 31 minutes to 81 minutes).

Our research team aggregated the comments into an Excel file. Specifically, we aggregated the comments for each measure and individual items. In this way, we could determine the frequency of themes among the comments. We reviewed the comments until we came to a consensus about the changes to the items and measures. We reviewed the changes with two experts in the autism field.

We then examined operational equivalence and evaluated the changes to the items by piloting the measure with the sample. Specifically, to determine operational equivalence, we shared the instructions for each measure with the participants so they could provide feedback about the administration of each measure. We contacted the same 30 Latinx participants and asked them to complete the revised measures via Research Electronic Data Capture (REDCap). As part of the REDCap survey, participants were asked open-ended questions about each measure. Specifically, participants were asked “How did you feel about the previous questions?”; and “Are there any questions that should be changed?” and “Are there are any response options that should be changed?”.

After completing the survey, we scheduled individual, zoom or phone interviews with each participant. We expected that this interview would be short given that we elicited their feedback in the survey and prior interview. For this interview, we asked each participant: “What was your overall impression of the measure?”; “Which questions should be revised?”; “How would you revise them?”; and “Is there anything else you would like to say”. We asked each of these questions for each of the measures. On average, the second interview was 13 minutes ranging from 4 minutes to 37 minutes. Interviews were conducted in the preferred language of the participants.

Our research team examined participant feedback to identify common themes. Altogether, our team met to review their comments. We reached consensus about minor revisions to the survey.

Measures

Advocacy Skills and Comfort Scale

Measured via 10 items about advocating for their son/daughter, the Advocacy Skills and Comfort Scale has been used in prior research with parents of youth with autism (Taylor et al., 2017). Each item has a 5-point Likert scale. Prior research suggests that Advocacy Skills and Comfort Scale has high reliability (alpha = .87, Burke et al., 2016).

Advocacy Activities Scale

Measured via 16 items about advocacy at the individual level (i.e., for one’s own child), peer level (i.e., advocacy for other families), and systemic level (i.e., advocacy for change for all individuals), the Advocacy Activities Scale has been used in prior research about parents of youth with autism (Author, submitted). Each item has a 5-point Likert scale to determine the frequency of each advocacy activity. Prior research suggests high reliability (alpha = .92, Author, submitted).

Knowledge Scale

Measured via 22 multiple choice questions about adult disability services, the Knowledge Scale has been used in prior research with parents of youth with autism (Taylor et al., 2017). Each item has four potential response options; only one option is correct. Each response is then recoded as “correct” (1) or “incorrect” (0). Prior research suggests high reliability and no floor or ceiling effects (Taylor et al., 2017).

Family Empowerment Scale (FES)

Comprised of 32 questions, the FES (Koren et al., 1992), measures the extent to which families feel empowered in relation to the: family, service system, and larger community and political environment. Each item is rated on a 5-point Likert scale. The FES has been demonstrated to have high reliability among parents of youth with autism (alpha = .93, Zemantic et al., 2021).

Analyses

Four research team members participated in the data analysis. Specifically, two bilingual (in English and Spanish) research team members reviewed the data in Spanish while two researchers reviewed the data in English. Each member reviewed the data multiple times to familiarize themselves with the data (Tesch, 1990). Emergent design was used to code the data (Patton, 2002). Because there were no a priori codes, inductive data analysis was used to code the data. Specifically, each team member independently coded the interviews. Using a word-by-word approach, they individually coded all data related to changes in the measures. Each piece of data was compared with the other data, highlighted, and annotated with a specific phrase (Creswell, 2003). Each new piece of data was then compared with previously coded data to check if the new data were considered a new idea or can be an existing code. The research team met to compare codes and resolve differences. Once all data were coded, the research team created a codebook. Then, the same team members used the codebook to re-examine the data. During this process, they determined whether new codes should be added to the codebook. The codes were grouped into categories and organized into themes grounded in the data. During the coding process, if there were any coding disagreements, the team members discussed codes until consensus was reached.

After completing the codebook, the research team examined the codebook to determine which changes should be made to the measures. Such decisions were made by considering the frequency of each of the suggested changes as well as the strength of the rationale for the change. After deciding on changes, the revised measures were shared with two autism experts for their feedback. Then, the revised measures were shared with the participants. Specifically, participants provided feedback (i.e., open-ended survey responses and interviews) about the revised measures. The same aforementioned method was used to analyze the data to inform any additional changes to the measures. For the quantitative analyses, Cronbach alphas were conducted to determine the reliability of each scale.

Positionality

Our research team included five individuals. All individuals had experience working with families of individuals with autism and conducting research. One of the individuals identified as the parent of a child with autism. Of the team, two individuals were fluent in Spanish. Three of the researchers were individuals of color; and one researcher identified as Latina. Altogether, our team brough many strengths to the project given our personal and professional backgrounds. Our team values the advocacy, knowledge, and empowerment of parents of individuals with autism. To recognize and address our biases, we engaged in weekly peer debriefing.

Compliance with Ethical Standards

There were no potential conflicts of interest in this study. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study received approval from the University Institutional Review Board to conduct research with human subjects. Each participant provided informed consent before participating in the study.

Findings

Suggestions to Make the Measures Culturally Responsive for Latino Families

There were three types of suggestions to ensure the cultural responsiveness of each scale, changes to: language, wording, and vocabulary; format and procedure; and concepts and cultural practices. See Table 2.

Table 2.

Sample Changes Made to the Measures Based on Participants’ Feedback

Original item	Revised Item	Measure	What was adapted
Which of the following describes competitive employment in an integrated work setting with ongoing support services for individuals with disabilities?	Which of the following options describes employment in an inclusive work setting with ongoing supports for individuals with disabilities?	Knowledge	Language, wording, and vocabulary
Seleccione las dos legislaciones que pueden financiar a los estudiantes con discapacidad recibir educación post-secundaria?	Seleccione las dos políticas que pueden ayudar a pagar la educación post-secundaria a los estudiantes con discapacidad	Knowledge	Language, wording, and vocabulary
Which of the following is NOT a requirement for Supplemental Security Income (SSI)? a) To meet the disability eligibility criteria b) To be unable to work at a substantial level c) To have less than $2,000 in countable resources d) To have an intellectual disability	Which of the following is NOT a requirement for Supplemental Security Income (SSI)? a) To meet the disability eligibility criteria b) To have less than $2,000 in countable resources c) To have an intellectual disability d) I do not know	Knowledge	Format
¿Cuál de los siguientes NO PUEDE ser proporcionado por la exención de Medicaid de Servicios basados en el hogar y la comunidad?	¿Cuál de los siguientes NO PUEDE ser financiado por la exoneración (waiver) de Medicaid de los Servicios Basados en el Hogar y la Comunidad (HCBS)?	Knowledge	Format
Tengo ideas sobre el sistema de servicios ideal para niños	Tengo ideas sobre cómo debería ser el sistema de servicios ideal para mi hijo/a.	Empowerment	Language, wording, and vocabulary
I feel that I can approve all the services my son/daughter receives	I feel that I have a right to approve all services my son/daughter receives	Empowerment	Concepts, Cultural Practices
Cuando sea necesario, busco servicios para mi hijo/a y mi familia	Cuando es necesario, tomo la iniciativa y busco servicios para mi hijo/a y mi familia.	Empowerment	Concepts, Cultural Practices
Visited the office or held meetings with legislators about disability services?	Visited the office or held meetings with politicians about disability services?	Advocacy	Language, wording, and vocabulary
How able are you to assert yourself in trying to get services and/or supports for your child?	How confident are you in your ability to get services and/or support for your child?	Advocacy	Language, wording and vocabulary
¿Qué tan bien cree que mantiene la calma y no se opone a los proveedores/agencias/profesionales?	¿Qué tan bien cree que mantiene la calma (no se enoja) cuando no está de acuerdo con los proveedores/agencias/profesionales?	Advocacy	Concepts, Cultural Practices

Changes to Language, Wording, and Vocabulary

Advocacy Measures.

The word “advocacy” does not have a direct translation in Spanish. In the first Spanish version of the advocacy measures, the words “abogar” [plead] and the phrase “conocer y defender tus derechos” [knowing and defending your rights] were used to describe advocacy. Participants reported mixed responses regarding which translation was appropriate. A participant suggested using the phrase “conocimiento y promocion de sus derechos” [knowledge and promotion of your rights] and commented that the word “abogar” sounded unfamiliar and unnatural in Spanish. However, two participants reported that having one word to describe advocacy is better than a phrase. Having attended several advocacy programs, the same two participants reported that they had gotten accustomed to “abogar”. Considering the mixed feedback along with overall request for shorter items, the word “abogar” was retained to refer to advocacy.

There were additional revisions to the advocacy measure. Some participants suggested changing the phrase “How able are you to…” to “How comfortable do you feel to…” or “How capable do you feel to…”. Another common suggestion was regarding the word ‘assert’ and its corresponding word ‘reafirmarse’ in Spanish. Some participants noted this word as challenging and suggested replacing it, although they did not provide suggestions of a replacement word. Whenever possible and when there were specific suggested replacements, the suggested small wording changes were made in the measure.

Knowledge Measure.

When revising the knowledge questionnaire, some participants raised concerns about the wordiness and long length of the questions. When asked about her perspective of the measure overall, a participant commented “I would word it [the item] differently-so that it is not so redundant.” Some participants provided specific suggestions for replacing extant questions with shorter questions using simpler terms, aiming to ensure clarity and ease of understanding for all participants. For example, two participants suggested simplifying the question, “Which of the following options describes competitive employment opportunities in an integrated work setting with ongoing support for individuals with disabilities?’ by removing the word “competitive”. Another participant suggested replacing “integrated work setting” with “inclusive work setting”. Thus, changes were made to shorten and simplify questions.

Additionally, participants provided suggestions to revise specific vocabulary. A participant noted that the terms “waiver” and “voucher” may be difficult to accurately translate to Spanish. Relatedly, some participants reported that they were unfamiliar with the term “waiver”, which was originally translated as ‘exención’. To address this concern, participants offered alternative words such as “exoneration” and “exemption”. When reviewing the Spanish version of the measure, participants also suggested revising the term “voucher". Participants suggested considering the alternatives of “cupón” [coupon] and “vale” [coupon]. The measure was revised, accordingly.

Empowerment Measure.

Some participants suggested rearranging clauses to make more natural sentences. A participant suggested switching the order of the clauses from “I know what to do when problems with my child arise” to “When problems with my child arise, I know what to do”. Similarly, another participant suggested removing articles and replacing some words. For the item ‘Creo que puedo participar en el mejoramiento de servicios para aquellos como mi hijo/a en mi comunidad" [I believe that I can have a part in improving services for those like my child in my community], the participant suggested deleting ‘el’, adding the article ‘los’, and replacing ‘mejoramiento’ with ‘mejorar’. Thus, the participant suggested revising the item to ‘Creo que puedo participar en mejorar los servicios para aquellos como mi hijo/a en mi comunidad’ [I believe I can participate in improving services for those like my child in my community]. The suggested changes were made to the measure.

Across English and Spanish-speaking participants, many participants reported that they did not understand the word "legislators". In English, the word “legislators” was replaced with ‘lawmakers’. However, in Spanish, “legislators” was replaced with “representantes legales” [legal representatives]. Yet, upon the second review of the revised empowerment measure, some participants struggled with the term “representantes legales” reporting that it refers to ‘lawyers’ rather than ‘legislators’. Based on this feedback, the term was revised and the term “políticos” or ‘politician’ was selected for the measure in both Spanish and English.

There were a few other vocabulary suggestions. Some participants suggested replacing the word “bills” with “laws”, and the word “statements” with “sentences” or “phrases”. Some participants reported that the term “child with a disability” should be replaced with “adult with a disability”, “young adult with a disability”, or “individual with a disability” to reflect the broader population. The suggested changes were made to the measure.

Changes to the Format and Procedures

Advocacy Measures.

Participants had no consistent suggestions for changes to the format or procedures of the advocacy measures.

Knowledge Measure.

With respect to the Spanish version, several participants suggested adding the English name of each service or benefit given that--even though their preferred language was Spanish--most service providers refer to these services and benefits in English. A participant stated:

Normally, terms are in English. Sometimes translating the services is more confusing because this is not how people hear it or find them when they go to the offices or apply for them. It is not that the translation is done wrong. It is only that the name in Spanish is not familiar. Even when the doctor tells you to apply for a service, they would name it in English.

A different participant suggested using the English name of some laws and benefits such as the “Affordable Care Act” and “public housing” using italics to highlight words in English in the Spanish version of the measure. Additionally, two participants suggested always including the full name of laws (e.g., the Individuals with Disabilities Education Act) along with their acronyms (e.g., IDEA) rather than writing only the full name of the law in its first use and then referring to the law by an acronym thereafter. These changes were made in the revised measure.

Participants were asked about the response options for the measure given its multiple-choice format. Although it was not unanimous, most participants reported that the best way to simplify the response options was by adding an “I don’t know” response option. A participant commented that adding an “I don’t know” option may be helpful in preventing participants from guessing the responses and may give researchers a clearer understanding of participant knowledge. Accordingly, an “I don’t know” option was added as a consistent response option.

Empowerment Measure.

Participants had no suggestions for changes to the format or procedures of the empowerment measure.

Changes to Concepts and Cultural Practices

Advocacy Measures.

In both rounds of data collection, some participants reported struggling with an item asking about how “calm” they stayed in meetings. A participant commented: “Staying calm is not something that we want to encourage. Latino families stay calm by default. We want families to be able to advocate for their children”. Similarly, another participant reported: “Sometimes staying calm does not give you results. Sometimes you have to fight to get the professional’s attention”. We gave careful thought to consider whether to change this item. While some participants did not agree with the item, they often did not offer alternative words. Our team considered replacing “calm” with “even-keeled”. We shared the participant feedback and our suggested replacement with one of our autism experts. She suggested retaining “calm” in the wording but adding in a parenthetical phrase (e.g., “not getting angry”). This change was made in the revised survey.

Throughout both rounds of data collection, some participants expressed mixed opinions about items related to legislative advocacy. For example, a participant reported: “Most people don’t do that [legislative advocacy]. You can send letters, but they [legislators] won’t listen. In my experience, they only ask for support, but when you need them, they are not there for you.” Conversely, a participant shared about her positive experience contacting legislators:

The law stated that once they [students with disabilities] turn 22, they had to leave the school, and my son’s birthday was in January. And he was not going to be able to graduate with the other students. I have a friend and we were involved in advocating so that they can stay school. And then the governor passed that bill. And it was because we pushed as parents for it to happen.

Because some participants valued legislative advocacy, the items related to legislative advocacy were retained in the measures.

Knowledge Measure.

Some participants reported that the Knowledge measure was “too technical”. A participant characterized the Knowledge measure as “rather complex”; another participant commented that the Knowledge measure “feels like a test”. However, after incorporating the participant’s suggestions, during the second round of feedback, participants reported more positive experiences with the Knowledge measure. During the second interview, a participant shared, “This time around, it was definitely more clear.” Some participants said that they would like to have a copy of the right responses as a resource to remember the information.

Empowerment Measure.

Some participants shared that certain FES concepts and practices were not mainstream in Latino culture. A participant reported that supporting others in the community felt anonymous. She stated: “In the Latino culture, we have familism and we support our neighbors and our family, but we rarely want to help ‘the community’, it is too anonymous.” Notably, some participants reported engaging in political and community empowerment. Thus, while there was disagreement about the political and community aspect of empowerment, these items were retained in the scale.

Similar to the advocacy measures, several participants shared their perspectives regarding contacting legislators. For example, a participant shared:

[We would need to] provide people background about the expectations from citizens or people living in the US. This is very unnatural. We don’t have to assume that people know this is the expectation.

Similarly, another participant commented:

Not sure if it [the statement] would make people uncomfortable, but I have never done it. It may be a cultural thing. We are not used to relate or get in touch with legislators. If you ask me, I would take it out. There may be other parents who are very involved, so maybe you can keep it and we would just mark “no”, or “never.”

Some participants commented that although legislative advocacy is uncommon, asking about legislative advocacy would not make people uncomfortable. A participant stated “Questions about reaching out to legislators won’t make people feel uncomfortable. They will just say ‘no’ if they don’t do it.” Importantly, one participant commented that depending on the immigration status, some people may feel uncomfortable answering questions related to legislators. Given the mixed feedback, the items related to legislative advocacy were retained in the measure.

Reliability of the Adapted Measures

Reliability was high for each of the measures. Specifically, for the Knowledge Measure, the Kuder-Richardson coefficient was .88. For the Advocacy Skills and Comfort measure, the Cronbach’s alpha was .89. For the Advocacy Activities Scale, the Cronbach’s alpha was .90. Finally, for the FES, the Cronbach’s alpha was .88. See Tables 3-6 for the final measures.

Table 3.

Revised Knowledge Scale

Next, we would like to find out what you currently know about the adult service delivery system. Please circle the response you think best answers each of the following questions. Please answer every question without using any resources to look up answers. If you do not know the answer, please take your best guess. Which of the following requires person-centered planning (i.e., wherein all decisions are based on the strengths, needs, and preferences of the person with a disability)? Home and Community-Based Services Medicaid Waivers Supplemental Security Income Social Security Disability Insurance I do not know Select the two pieces of legislation that enable students with disabilities to receive accommodations in post-secondary education. Individuals with Disabilities Education Act (IDEA) and Section 504 Section 504 and the Americans with Disabilities Act (ADA) ADA and IDEA I do not know What paperwork is necessary for a transition-aged youth to qualify to receive Workforce Innovation and Opportunity Act services? An Individualized Education Program (IEP) A documented disability An Individualized Education Program (IEP) or Section 504 plan I do not know Which of the following options describes employment in an inclusive work setting with ongoing support services for individuals with disabilities? Supported employment Competitive employment Customized employment I do not know With respect to long term services and supports, which of the following is an alternative to home and community-based waivers? A Community for Integrated Living Arrangement (CILA) An intermediate care facility (ICF) A group home I do not know When moving to a new state, what do you need to do to continue to access the services with the Home and Community-Based Services Medicaid waivers? The youth with a disability must re-apply for a waiver The youth always automatically receives the waiver upon moving to a new state Eligibility for the waiver is the same in each state I do not know Which of the following is NOT a requirement for Supplemental Security Income (SSI)? To meet the disability eligibility criteria To have less than $2,000 in countable resources To have an intellectual disability I do not know What is “substantial gainful activity”? Inability to work in any capacity Unable to make a certain amount of money as determined by the Social Security Administration Unable to make a livable income I do not know With respect to Supplemental Security Income (SSI), what are your options if your young adult cannot handle their finances? Become a guardian Become a representative payee Informally manage your child’s finances I do not know Select two pieces of policies that may help pay for students with disabilities to receive post-secondary education. Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) Vocational Rehabilitation and Supplemental Security Income (SSI) Americans with Disabilities Act (ADA) and Supplemental Security Income (SSI) I do not know How is a youth eligible for vocational rehabilitation services? The youth has a disability making it difficult to keep a job and the youth can follow an employment plan The youth can follow an employment plan The youth has a disability making it difficult to keep a job I do not know How can an individual qualify for Social Security Disability Insurance (SSDI)? Have worked enough to have sufficient social security credits Have an intellectual disability Receive Supplemental Security Income (SSI) I do not know How does an individual qualify for the Supplemental Nutrition Assistance Program (SNAP)? Have a developmental disability Receive Supplemental Security Income (SSI) Meet specified income requirements I do not know Which of the following benefits automatically qualifies your child for Medicare health insurance? Supplemental Security Income (SSI) Social Security Disability Insurance (SSDI) Having an intellectual disability I do not know The Affordable Care Act (also known as Obamacare) allows children to stay on their parents’ insurance plans until what age? 18 21 26 I do not know When an employer and worker design a job, it is called… Integrated employment Customized employment Supported employment I do not know Which of the following CANNOT be paid for by a Home and Community-Based Services Medicaid waiver? Personal care services State operated developmental center or congregate housing Transportation I do not know An ABLE account can hold… Only money Money and assets Only certain assets I do not know Who has the sole authority to make decisions about the use of a special needs trust? The person with a disability The trustee The bank I do not know What is public housing? Housing that is subsidized Housing wherein the landlord accepts a voucher Alternate housing for individuals with disabilities that is the same cost as other houses in the area I do not know Which of the following is the MOST form of decision-making support which could limit the choices of the person with a disability? Conservatorship or guardianship Durable Power of Attorney Healthcare Surrogate I do not know How can an individual be eligible for a housing voucher? Meet the prescribed income requirements Receive supplemental security income (SSI) Meet the income and benefits requirements I do not know

Table 6.

Revised Empowerment Scale

	Not true at all	Mostly not true	Somewhat True	Mostly True	Very True
1. I feel that I have a right to approve all services my son/daughter receives.
2. When problems arise with my son/daughter, I handle them pretty well
3. I feel I can have a part in improving services for those like my son/daughter in my community
4. I feel confident in my ability to help my son/daughter grow and develop
5. I know the steps to take when I am concerned my son/daughter is receiving poor services
6. I make sure that professionals understand my opinions about what services my son/daughter receives
7. I know what to do when problems arise with my son/daughter
8. I get in touch with my lawmaker when important bills or issues concerning people with disabilities.
9. I feel my family life is under control
10. I have a good understanding the service system that my son/daughter is in.
11. I am able to make good decisions about what services my son/daughter needs.
12. I am able to work with agencies and professionals to decide what services my son/daughter needs.
13. I make sure I stay in regular contact with professionals who are providing services to my son/daughter
14. I have ideas about the ideal service system for my son/daughter
15. I help other families get the services they need.
16. I am able to get information to help me better understand my son/daughter
17. I believe that other parents and I can influence services for people with disabilities
18. My opinion is just as important as professionals’ opinions in deciding what services my son/daughter needs
19. I communicate to professionals what I think about services being provided to my son/daughter
20. I communicate with people in agencies, government, and local community organizations how services for adults can be improved
21. I believe I can solve problems with my son/daughter when they happen
22. I know how to get agency administrators or legislators to listen to me
23. I know what services my son/daughter needs
24. I know what the rights of parent and children are under the special education laws
25. I feel that my knowledge and experience as a parent can be used to improve services for my son/daughter and families
26. When I need help with problems in my family, I am able to ask for help from others
27. I make efforts to learn new ways to help my son/daughter grow and develop
28. When necessary, I take the initiative in looking for services for my son/daughter and family
29. When dealing with my son/daughter, I focus on the good things as well as the problems
30. I have a good understanding of the services system that my son/daughter is involved in
31. When faced with a problem involving my son/daughter, I decide what to do and then do it
32. Professionals should ask me what services I want for my son/daughter
33. I have a good understanding of my son/daughter’s disability.
34. I feel I am a good parent

Discussion

Increasingly, interventions are being developed and tested for Latino families of individuals with autism. Given that Latino (versus White) families are less likely to access services, many interventions are designed to increase parent knowledge, advocacy, and empowerment—key traits that relate to improved service access (Taylor et al., 2017). Yet, none of the measures related to these traits have been validated among Latino families. In this study, we examined and revised four measures to ensure their cultural responsiveness. We had three main findings.

First, simple wording is best. Throughout each of the measures, participants consistently reported wanting simplified and/or shortened language. Notably, this finding persisted among the English and Spanish versions of the measures. Thus, it seems that this finding may not be an artifact of reading proficiency but rather to ensure the accessibility of each item. Most of the extant research has consistently found that language is a barrier in Latino families accessing services (for a review, see Aleman-Tovar & Burke, 2022). To that end, researchers are beginning to translate measures into Spanish. However, our findings suggest that translation is insufficient to ensure accessibility. Items should be revised to ensure simple text in the appropriate language.

This finding underscores the importance of plain language when considering measures. With respect to research findings, plain language summaries have been heralded as best practice to disseminate research to a general audience (Gudi et al., 2021). A plain language summary is a lay-friendly synopsis of research (Stoll et al., 2022). The consideration of plain language can be extended beyond dissemination to include translated measures. Indeed, to ensure that research is accurate, participants must understand the items in each measure.

Second, legislative advocacy is nuanced among Latino families of children with autism. Participants had mixed feedback with respect to advocating for systemic change with legislators with some participants reporting not engaging with legislators at all. The taxonomy of advocacy includes advocacy at the individual, peer, and systemic levels (Author, submitted; Balcazar et al., 1996). For a research measure, it is important to have variability in scores. Thus, even though some participants consistently reported not engaging in legislative advocacy, items about legislative advocacy were retained in the measure.

The issue about items related to legislative advocacy may point to the larger context of advocacy among Latino families. Consistent with this study, research has suggested that Latino families of children with disabilities face greater systemic barriers in conducting systemic advocacy, especially in the context of speaking to legislators (Burke et al., 2018). Although advocacy is a critical construct for Latino families to access services (Cohen, 2013), advocacy also occurs within a given context—a context with unique and/or exacerbated systemic barriers (e.g., citizenship, language) pertaining to Latino families. To this end, it is important that measures not only gauge the frequency with which advocacy occurs but also acknowledge the context wherein advocacy exists.

Third, some words and phrases do not translate accurately into Spanish. In our study, such words included “advocacy”; phrases included acronyms and the names of legislation protecting and supporting individuals with disabilities and their families. While the World Health Organization states that translated measures should include conceptually equivalent constructs in other languages (WHO, 2019), it is unclear what happens when a construct does not have a clear counterpart in the other language. To this end, our study suggests eliciting feedback from the intended community to develop items that are understandable in both English and Spanish. Instead of centering our changes on one language (e.g., making changes in Spanish to mirror the English version or vice versa), changes were made to both measures to align with one another.

Implications for Future Research

This study has several implications for future research. First, more work needs to be done to ensure the cultural responsiveness of measures. Relatedly, such work should consider the nuance in determining cultural responsiveness. At the beginning of this project, we specifically recruited 15 Latino parents of children with autism who could review the measures in English and 15 Latino parents of children with autism who could review the measures in Spanish. However, several participants were bilingual; accordingly, they requested the measures in both languages for comparison. Researchers should consider asking participants whether they are bilingual and whether they would like to review the measures in both languages.

Researchers may also consider the nuance in the heterogeneity within Latino culture. In this study, participants reflected diverse heritages with most participants identifying as Mexican but others reflecting Central and South America or Puerto Rico. There may be inter-cultural variation depending on the participant’s origin (Magaña, 2000). Future research should make concerted attempts to increase the heterogeneity of specific heritages within the sample.

Our study suggests that future researchers need to have guidelines about the cultural adaptation process. Researchers should determine whether they would consider dropping items if a cultural group does not find them relevant and how this may (or may not) impact the reliability and structure of the measure. Researchers may also consider whether they are prioritizing one language over another (i.e., centering the dominant culture over the minority culture) or making the same changes to both versions of the measure. By having guidelines to make decisions, researchers can systematically ensure the cultural responsiveness of measures.

Implications for Practice

There are several implications for practitioners. At the most basic level, practitioners may use our revised measures (in English and Spanish) when trying to determine the advocacy, knowledge, and empowerment of the families they serve. To that end, practitioners should offer both language versions so it is at the participant’s discretion in which language to complete the survey. Relatedly, the degree of acculturation may matter in considering cultural responsiveness. Thus, practitioners may not only consider the cultural background of their constituency but also other factors that could influence their interpretation of measures.

Practitioners may also consider using our adaptation process for other measures. It is important to put in effort to ensuring the cultural responsiveness of measures. Our suggested method may be replicated by practitioners to ensure that their measures are accurately identifying the needs of families. Relatedly, replicating the adaptation process can also help ensure that measures are sensitive to the values of Latino families.

Table 4.

Revised Parent Advocacy Scale

	To what extent have you…	Not at all	A little	Sometimes	Often	Very Often
1.	Searched the internet to find agencies and/or services to meet your child’s needs?	1	2	3	4	5
2.	Talked with other parents about agencies and/or services to meet your child’s needs?	1	2	3	4	5
3.	Called adult service provider agencies to ask about eligibility and services?	1	2	3	4	5
4.	Attended trainings about adult services?	1	2	3	4	5
5.	Documented (i.e., put into writing) your advocacy/communication with agencies and professionals?	1	2	3	4	5
6.	Asked questions to professionals about services/eligibility?	1	2	3	4	5
7.	Talked with other parents (over the phone) about agencies and/or services to meet their child’s needs?	1	2	3	4	5
8.	Talked with other parents in person about agencies and/or services to meet their child’s needs?	1	2	3	4	5
9.	Organized trainings or support groups for other families about adult services?	1	2	3	4	5
10.	Reviewed the records of another family to help them determine which services they are eligible for?	1	2	3	4	5
11.	Helped another family communicate with agencies and professionals?	1	2	3	4	5
12.	Visited the office or held meetings with lawmakers about disability services?	1	2	3	4	5
13.	Written letters to legislators about disability services?	1	2	3	4	5
14.	Tried to get media attention about disability services?	1	2	3	4	5
15.	Taken on leadership roles in national, state or local agencies related to disability services?
16.	Given a talk at state or national conferences about disability services?	1	2	3	4	5

Table 5.

Revised Advocacy Skills and Comfort Scale

	Not at all	Below average	Average	Good	Excellent
1. How knowledgeable do you think you are about your rights in the adult service system?	1	2	3	4	5
2.How able are you to apply your rights and knowledge of the laws in navigating the adult service system?	1	2	3	4	5
3.How able are you to advocate for your child’s needs in trying to get adult services?	1	2	3	4	5
4.How confident are you in your ability to get services and/or supports for your child?	1	2	3	4	5
5.How able are you to effectively communicate with providers/agencies/professionals?	1	2	3	4	5
6.How well do you think you stay calm (i.e., not get angry) and non-adversarial with providers/agencies/professionals?	1	2	3	4	5
7.What is your self-confidence like with providers/agencies/professionals?	1	2	3	4	5
8.What is your working relationship like with providers/agencies/professionals?	1	2	3	4	5
9.How able are you to effectively participate in meetings with providers/agencies/professionals?	1	2	3	4	5
10.How prepared do you feel to collaborate with providers/agencies/professionals?	1	2	3	4	5