Engaging Diverse Stakeholders to Improve Therapy Access for Hispanic and Latino Autistic Individuals and Families
Authors: Rios-Vega Lady , Rising Kristin , Fields Matthew , Freedman Brian , Toole Nicola , Ramos Julian , Schaaf Roseann 
Published: February 2025

Importance: Stakeholder engagement in research is essential to assure that the perspectives of diverse populations studied are represented.

Objective: To describe the process and experiences of engaging Hispanic and Latino stakeholders in research.

Design: A mixed-methods prospective design was used to plan, prepare, and evaluate stakeholder engagement.

Setting: Online, via Zoom.

Participants: Twenty-two stakeholder partners, including 7 Spanish-speaking Hispanic and Latino parents and caregivers of autistic children, 3 Hispanic and Latino autistic individuals, 3 teachers, 3 occupational therapists, 3 Hispanic and Latino cultural experts, and 3 autism experts working with Hispanic and Latino autistic populations were recruited via snowball sampling and engaged in various project activities.

Intervention: Activities for each engagement phase were implemented in Spanish and English. Stakeholder advisory boards were formed following the Patient-Centered Outcomes Research Institute’s engagement principles. Training modules were provided to the stakeholders to support engagement.

Outcomes and Measures: Stakeholder partners’ feedback was collected. The Acceptability of Intervention Measure (AIM) assessed stakeholders’ perceptions of the training modules. Additionally, two surveys were developed to evaluate the accessibility of and satisfaction with the modules.

Results: Three advisory boards were created, each comprising culturally diverse, multilingual stakeholders dedicated to a particular project area. The stakeholder partners found the training modules acceptable and accessible as a learning strategy with high satisfaction levels.

Conclusions and Relevance: Partnerships and capacity building are essential for fostering genuine engagement. Implementing and evaluating training and its acceptability is crucial for effective stakeholder participation. Meaningful engagement of culturally diverse populations is necessary for inclusive and equitable occupational therapy research.

Plain-Language Summary: Occupational therapists use evidence-based interventions. There is a need for culturally sensitive interventions, but many autism treatments are based on research with mostly White participants, which may not be effective for people from other cultures. To make the interventions more culturally relevant, occupational therapists must include the communities they serve. In this study, we formed three stakeholder advisory boards with Hispanic and Latino parents and caregivers of autistic children, autistic adults, occupational therapists, cultural experts, teachers, and autism experts. The purpose of the stakeholder advisory boards is to help us guide a project that will culturally adapt an evidence-based intervention for autistic children and improve access to and the use of occupational therapy services for Hispanic and Latino autistic communities. The authors share the engagement process they used and the feedback they received on the training modules.

Positionality Statement: The term Hispanic has historically been applied to individuals with ancestry from Spain or those whose primary language is Spanish. Although some embrace the term, others find it problematic because of its association with the Spanish colonization and its inability to reflect the identities of many people from Central and South America (Martínez & Gonzalez, 2020). The term Latino and its variations are used for individuals with origins in Latin America, including Central America, South America, and the Caribbean (Martínez & Gonzalez, 2020); this term is preferred by many. Research reveals varying preferences for these terms across populations (Martínez & Gonzalez, 2020). Given the diverse preferences, and to promote inclusivity, we use Hispanic and Latino throughout this article. Furthermore, we implement the identity-first terminology for autistic persons based on autistic individuals’ preferences for using identity-first language (Taboas et al., 2023). The first author, Lady Rios-Vega, identifies as a Latina. She has served minoritized families in early intervention, which revealed the disparities and inequities in access to and utilization of occupational therapy services within the Hispanic and Latino autistic communities. Her experiences have strengthened her commitment to prioritizing the voices and needs of marginalized groups in occupational therapy interventions and research. We acknowledge that her perspectives may influence how data are presented. In addition, the diverse backgrounds and experiences of all contributing authors shape our work, guiding us to pursue our objectives with a strong focus on equity and inclusivity. The senior author, Roseann Schaaf, identifies as a White Caucasian woman from a middle-class background. She is an occupational therapist, neuroscientist, and an experienced autism researcher. She acknowledges the potential impact of her privileged positionality when studying the experiences of marginalized communities, and she is committed to mitigating any biases that may arise from her own perspective.