Engaging Diverse Stakeholders to Improve Therapy Access for Hispanic and Latino Autistic Individuals and Families.
Stakeholder engagement in research is essential to assure that the perspectives of diverse populations studied are represented.
To describe the process and experiences of engaging Hispanic and Latino stakeholders in research.
A mixed-methods prospective design was used to plan, prepare, and evaluate stakeholder engagement.
Online, via Zoom.
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.
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.
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.
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.
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.
Rios-Vega L
，Rising K
，Fields M
，Freedman B
，Toole N
，Ramos J
，Schaaf R
... -
《AMERICAN JOURNAL OF OCCUPATIONAL THERAPY》
Role of Familismo in Latino Families Affected by Cancer: Implications for Culturally Tailored Occupational Therapy Services.
Latino/a cancer survivors (LCSs) and their family caregivers (FCs) experience barriers to participation. The occupational therapy literature centered on Latinos affected by cancer is limited, including the examination of cultural values such as familismo.
To explore the impact of familismo on LCSs and their FCs during treatment and survivorship from the perspectives of several stakeholders.
Qualitative, cross-sectional study using semistructured interviews with various stakeholders recruited via purposive sampling. A detailed audit trail and peer examination were used to enhance rigor. Thematic analysis was used to identify, analyze, and report major themes.
Urban Midwestern city.
Diverse stakeholders in cancer survivorship among Latino families-LCSs living in survivorship (n = 8) and FCs (n = 5)-and cancer care providers (n = 5).
LCSs were primarily female breast cancer survivors (75%), and most FCs were men (60%); only 1 LCS received occupational therapy services. Providers were 2 occupational therapists and 3 social workers. Participants described familismo as facilitating the multilevel support needed for everyday participation. Despite these tight family bonds, survivors and caregivers felt emotionally distant and were disappointed when cultural expectations were not met.
Familismo plays a complex and nuanced role among Latino families affected by cancer because it is a strength that many families can draw from; however, it can also create a cycle of unexpressed needs and inadequate support. Future implications include examining culturally tailored occupational therapy services that infuse prominent cultural values and embrace cultural humility. Plain-Language Summary: The occupational therapy cancer research base primarily focuses on White survivors. The profession needs to learn from diverse populations how best to support them. Focusing on Latino families affected by cancer, this study showed that familismo, which prioritizes family needs over individual needs, is a cultural value that plays out in many ways. Both survivors and caregivers were supported by many biological and chosen family members. Because of the collectivistic nature of familismo, individuals often put their family's needs before their own. Despite close family relationships, survivors and caregivers felt distant and unsupported. We provide suggestions for how to incorporate familismo in practice. As occupational therapy's role in cancer care grows, it must put diverse communities at the forefront and intentionally put effort into developing culturally tailored services. Positionality Statements: Ricardo Ramirez is a first-generation, bilingual, and Latino occupational therapist with family experience of cancer. Susan Magasi is a White occupational therapy educator and scholar with family experience of cancer. She is a qualitative methodologist and cancer health equity researcher. In this article, the term Latino/a is used to honor the chosen language of participants with this background. We recognize that terms such as Latinx are considered to be gender-neutral, however, only 4% of the community uses this term (Noe-Bustamante et al., 2024). The term survivor is used throughout this article because it reflects the language that participants used to refer to themselves.
Ramirez RD
，Magasi S
《AMERICAN JOURNAL OF OCCUPATIONAL THERAPY》
Interactive Computer-Adaptive Chronic Kidney Disease (I-C-CKD) Education for Hospitalized African American Patients: Protocol for a Randomized Controlled Trial.
End-stage kidney disease (ESKD) or kidney failure is a condition where the kidneys lose the ability to function. African American individuals are 4 times as likely to develop ESKD compared to White American individuals. In addition, African American patients are less likely to have an optimal dialysis start and to choose renal replacement therapy modalities that align with their goals and values. Our prior work shows that culturally tailored, in-person education improves patient outcomes. This is the foundation for our innovative intervention using an African American virtual patient educator as an option for hospitalized patients with chronic kidney disease (CKD).
The Interactive Computer-Adaptive Chronic Kidney Disease (I-C-CKD) study will determine whether the computerized adaptive education and usual hospital care impact the health literacy of African American patients with kidney disease. It will also assess how patients' lifestyle and commitment to health goals are impacted by the method of health literacy education.
We will screen, recruit, and enroll hospitalized patients who self-identify as African American and have advanced CKD based on their estimated glomerular filtration rate. Eligible patients who verbally consented will be randomly assigned into either the computerized adaptive education intervention group or the control group (usual hospital care). Patients in the intervention group will receive a culturally tailored, adaptive education module. To analyze pretest, posttest, and follow-up survey results on patient CKD knowledge, ESKD treatment options, and health goals, we will use a paired, 2-tailed t test with a Bonferroni adjustment for multiple comparisons.
Recruitment for the I-C-CKD study began on May 2, 2023. We are currently recruiting and have enrolled 96 patients who completed both pretest and posttest surveys as of December 2024. This includes 50 patients in the control group and 46 patients in the intervention group. Data analysis has not occurred.
African American individuals often receive less patient education about self-care and treatment options for CKD. We hope this study provides a solution to increase hospitalized African American patients' knowledge of CKD and motivation for CKD self-care through computerized adaptive education, reduce disparities, and improve patient outcomes.
ClinicalTrials.gov NCT06364358; https://clinicaltrials.gov/study/NCT06364358.
DERR1-10.2196/66846.
King A
，Omoniyi T
，Zasadzinski L
，Gaspard C
，Gorman D
，Saunders M
... -
《JMIR Research Protocols》
ResearchGate
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