Integrating Stakeholder Voices to Improve Occupational Therapy Research for Minoritized Autistic Hispanic and Latino Communities

Importance: Stakeholder voices advance client-centered, culturally responsive occupational therapy research. Objective: To describe how engagement of culturally diverse, multilingual, and multidisciplinary stakeholders shaped a project aimed at culturally adapting an evidence-based autism intervention. Design: A mixed-methods design was used to evaluate stakeholder engagement. Quantitative data were used to measure engagement frequency and quality, and qualitative data captured stakeholders’ experiences. Setting: Engagement activities conducted online and in person at a local community setting. Participants: Twenty-five stakeholders—7 parents or caregivers of autistic children, 3 autistic adults, 4 occupational therapy practitioners, 2 psychologists, 3 medical doctors, 3 cultural experts, and 3 teachers—were recruited through snowball sampling. Method: Stakeholders engaged in activities designed to support a project that evaluates two methods of engagement and completes the cultural adaptation of an evidence-based intervention. Activities were guided by the foundational expectations for partnerships as outlined by the Patient-Centered Outcomes Research Institute. Outcomes and Measures: The Stakeholder-Centric Engagement Evaluation measured engagement on a Likert scale ranging from 1 (never/poor) to 5 (always/excellent) for how often and how well engagement occurred. Qualitative data were collected using open questions in the survey. Results: Engagement frequency (M = 4.45, SD = 0.24) and quality (M = 4.29, SD = 0.23) were highly rated. Open-ended responses indicated that stakeholders were satisfied with their engagement and interested in additional capacity-building; their feedback shaped the main project in areas including recruitment, retention, data monitoring, and dissemination. Conclusions and Relevance: Stakeholders rated their research experiences highly. Engagement is vital to integrating lived experiences and cultural context into occupational therapy, advancing health equity through culturally responsive, client-centered care. Plain-Language Summary: The main project aimed to culturally adapt an evidence-based occupational therapy intervention for Hispanic and Latino autistic children and compare two methods of engagement. Hispanic and Latino families often face barriers accessing culturally and linguistically appropriate services and being included in research. This work was needed to ensure interventions are relevant, equitable, and supportive of their needs. The voices of those impacted by this work were included to guide the research process. We engaged 25 people—including parents, autistic adults, occupational therapy practitioners, psychologists, teachers, and cultural experts—to work closely with the research team. They supported the team through advisory boards and helped shape the project in important ways, such as improving how families are invited to join and how information is shared. Meetings were held mostly on Zoom, with some held in person. We measured how often and how meaningfully stakeholders were involved, and both were rated very highly. This shows that strong partnerships are possible and valuable. Listening to community voices can help ensure that research is more relevant, respectful, and effective. Projects such as this can make occupational therapy more accessible for children and families from different cultural and language backgrounds, ultimately improving health equity and quality of care. Positionality Statement: We use the terms Hispanic and Latino throughout this article to support inclusivity. The term Hispanic typically refers to people with Spanish ancestry or Spanish as a primary language; however, it is sometimes viewed as problematic because of its association with Spanish colonization. In contrast, Latino refers to people from Latin America, including the Caribbean. Given the variation in individual and community preferences, we acknowledge the complexity of these identities (Martínez & Gonzalez, 2021). Furthermore, we implement the identity-first terminology for autistic persons on the basis of their preference for using such language (Taboas et al., 2023). The first author, Lady Rios-Vega, identifies as a Latina. She is an occupational therapy practitioner and researcher who has served minoritized families. 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 woman from a middle-class background. She is an occupational therapy practitioner and an experienced autism researcher. She acknowledges the potential impact of her privileged positionality in studying the experiences of marginalized communities, and she is committed to mitigating any biases that may arise from her own perspective.