Cultural and Linguistic Adaptation of the ASPEN Intervention Program in Low-resource Communities

The University of Texas at Austin

Submitted by Sandra Vanegas, PhD, and Sandy Magaña, PhD, MSW

Focus

This project develops and evaluates a culturally and linguistically informed intervention that is tailored for racially and ethnically diverse families of children with autism in low-resource households. Inclusive interventions that can effectively serve diverse populations require cultural and linguistic adaptations. Many existing studies of interventions for individuals with autism are based on homogenous, majority-White samples or do not report demographic information about their samples (Vanegas et al., 2023; Magaña et al., 2021). As a result, the benefits of those interventions may not generalize to racially, ethnically, and socioeconomically diverse populations. This project has engaged parents and other community members in an iterative knowledge translation (KT) process to identify and test adaptations to make the intervention relevant and accessible to families with low resources.

Context

The ASD Screening and Parent ENgagement (ASPEN) intervention program is a culturally and linguistically informed, parent-mediated intervention (PMI) program designed to address the needs of children at risk of autism spectrum disorder (ASD) and their families who reside in low-resource households. PMIs focus on training parents and caregivers to act as their child’s primary intervention providers. ASPEN was adapted from Parents Taking Action (PTA) (Magaña et al., 2017), an intervention that teaches parents to use evidence-based strategies to enhance their children’s skills and abilities, and Project ImPACT (Ingersoll & Dvortcsak, 2010), a coaching program for parents of young children with autism. ASPEN combines Project ImPACT’s parent-coaching approach with PTA’s psychoeducation and parent mediation approaches.

The current project seeks to develop, deliver, and evaluate the ASPEN intervention program to serve families from diverse racial and ethnic backgrounds in low-resource households. Low-resource households are defined as those whose primary insurance provider is Medicaid, whose primary caregiver has a high school or lower education, or whose household income is less than or equal to 200 percent of the federal poverty level based on income and household size. Families participating in the ASPEN intervention receive 12 individual coaching sessions with professional student clinicians and a parent leader. Parent leaders are community members who share common backgrounds with families receiving the intervention and provide guidance based on their own experiences as parents of children with disabilities. ASPEN is being evaluated with families from low-resource households in Texas.

KT Activities

Researchers have identified several approaches and frameworks for cultural adaptation, many of which resemble Community Based Participatory Research (Magaña et al., 2021). This project has used a variety of community engagement approaches to develop and test a combination of cultural and linguistic adaptations and more general program improvements. Examples of these adaptations include the following:

  • Simplifying language and adding more comprehensive explanations to intervention materials. These changes make the intervention more approachable for families who are unfamiliar with concepts introduced in the intervention.
  • Making visual demonstrations such as instructional photos and videos more culturally representative. For example, the project now has a video library that shows real parents from diverse backgrounds using strategies in contexts that are familiar to many participants.
  • Adding more flexible translations for different dialects and varieties of Spanish. Although the PTA intervention already has been adapted for families in many different cultural and linguistic contexts, including Latino families (Magaña et al., 2021), the project recognizes that Spanish-speaking families served by ASPEN come from a wide range of cultural backgrounds and that there is no one-size-fits-all approach to cultural and linguistic adaptation.

The KT strategies that follow have allowed the project to develop, refine, and evaluate the intervention program in collaboration with families and other community members.

Establishing needs

The project team already was connected to families in Chicago through its work on other interventions. These connections provided firsthand insight into barriers to program participation for families with low resources. Project team members met many families at clinics or parent support groups who indicated that they struggled to find the services they needed for their children, or that they did not have the time or resources to participate in interventions that required large commitments. The ASPEN intervention was designed to meet these and other needs identified by families with low resources.

Testing and piloting the intervention

The project worked closely with two families in Chicago to test an early version of the intervention. Their feedback helped to inform program improvements and linguistic and cultural adaptations, such as adjustments to the phrasing of materials translated into Spanish. Several other families in Austin, Texas, piloted subsequent versions of the intervention in individual or group sessions. These pilot studies illuminated how different ways of organizing the sessions could make it easier for families to understand the material. For example, it became clear that participating families benefited from breakdowns of the material that explained why they were learning the strategies covered in the intervention—such as what child developmental milestones are and why they matter—before working on how to implement those strategies.

Convening a Community Advisory Board

An advisory board of parents and other community members guides the development of the ASPEN intervention program, recruitment approaches for families participating in research, and other key aspects of the project’s work. The advisory board meets quarterly to provide feedback on project activities and help the research team navigate challenges. The board has five members: three parents of children with autism, including one parent who is both a self-advocate and a professional who works with children with autism; a speech pathologist; and the president of a community organization for families of children with disabilities. Board members contribute both professional and lived experience to the project. They have been particularly influential in helping the project develop outreach strategies to recruit diverse families from low-resource households to participate in the evaluation.

Partnering with health care providers and community organizations

Partnerships with health care providers and community organizations help the project reach families that could benefit from participating in the evaluation. The project has close relationships with two local providers that provide families with information about how to participate in the intervention program. The project also works with several community organizations, including those that are not specific to individuals with disabilities. For example, the project has built a particularly strong relationship with a local Head Start program that shares information about ASPEN with families who receive Head Start services. The ASPEN project’s principal investigator has met and collaborated with local Head Start leaders through a years-long partnership.

Building these community relationships is critical to ensuring that the project serves a broad, diverse population. Because families with low resources tend to have less access to health care, recruiting evaluation participants exclusively from health care settings—although convenient—would miss many eligible families in need of services. To reach a more representative population of families that could benefit from the intervention, the ASPEN project’s lead researchers regularly attend community meetings and events to discuss the project in both English and Spanish with organizational leaders, family advocates, and other community members. The project commits substantial time and effort to initiate and sustain relationships with community organizations through organizational turnover and other changes, such as the COVID-19 pandemic.

Evaluating the intervention

The project is in its evaluation stage, simultaneously recruiting participants, delivering the intervention, and collecting outcome data. In addition to the community partnerships discussed earlier, the project has used social media to reach families that could be served by the intervention. About 60 families have participated in the evaluation so far, in either the intervention group or the control group. Parents in the intervention group are paired with student clinicians and parent leaders from similar backgrounds to be responsive to participating families’ cultural contexts. The control group receives the same materials and information as the intervention group, but in a more self-directed format without coaching. All families complete pre- and posttests to provide baseline and outcome data. They also provide continuous feedback to the project team by completing short evaluation surveys after each session. This feedback allows researchers to address challenges in real time. The evaluation also will inform decisions on how the intervention might be adapted for dissemination to a larger audience.

Lessons Learned

The project had to pursue more virtual recruitment and service delivery methods due to the COVID-19 pandemic. Because lack of access to technology can hinder participation for many low-resource households, the project obtained grant funding to provide tablets and Wi-Fi hotspots to participating families. Although these measures helped make the intervention accessible to families during a period of change and uncertainty, the pandemic also reinforced the value of personal connections to establish relationships with the population that the intervention seeks to serve. Recruiting individuals to participate in research requires building trust with potential participants, which is difficult to do over email or social media. The project has found research partners and participants through personal contact with community organizations and speaking with families at local events. Going out into the community has been important for fostering the collaborative relationships with parents and other community members that enable the project to adapt the intervention to families’ cultural and linguistic contexts.

Contact Information

NIDILRR Project Name: NIDILRR Project Name: Efficacy of the ASD Screening and Parent ENgagement (ASPEN) Intervention Program in Low-Resource Communities

Parent Organization: Texas Center for Disability Studies, University of Texas at Austin

Physical Address: Texas Center for Disability Studies, J. J. Pickle Research Campus, University of Texas at Austin, Austin, TX

Website: https://www.aspenprogramtx.org

Key Contact: Sandra Vanegas, sandra.vanegas@austin.utexas.edu

References

  • Ingersoll, B., & Dvortcsak, A. (2010). Teaching social communication to children with autism: A practitioner's guide to parent training and a manual for parents. In Teaching social communication to children with autism. Guilford Press.
  • Magaña, S., Dababnah, S., Xu, Y., Torres, M. G., Rieth, S. R., Corsello, C., Rangel, E., Brookman-Frazee, L., & Vanegas, S. B. (2021). Cultural adaptations of a parent training program for families of children with ASD/IDD: Parents taking action. In N. R. Riggs & B. Rigles (Eds.), International Review of Research in Developmental Disabilities, Volume 61 (pp. 263‒300). Academic Press. https://doi.org/10.1016/bs.irrdd.2021.07.005
  • Magaña, S., Lopez, K., & Machalicek, W. (2017). Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56(1), 59–74. https://doi.org/10.1111/famp.12169
  • Vanegas, S. B., Dueñas, A. D., Kunze, M., & Xu, Y. (2023). Adapting parent-focused interventions for diverse caregivers of children with intellectual and developmental disabilities: Lessons learned during global crises. Journal of Policy and Practice in Intellectual Disabilities, 20(1), 45– 57. https://doi.org/10.1111/jppi.12422