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》

Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults.

Love AMA ，Edwards C ，Cai RY ，Gibbs V ... -  《-》

Qualitative evidence synthesis informing our understanding of people's perceptions and experiences of targeted digital communication.

Health communication is an area where changing technologies, particularly digital technologies, have a growing role to play in delivering and exchanging health information between individuals, communities, health systems, and governments.[1] Such innovation has the potential to strengthen health systems and services, with substantial investments in digital health already taking place, particularly in low‐ and middle‐income countries. Communication using mobile phones is an important way of contacting individual people and the public more generally to deliver and exchange health information. Such technologies are used increasingly in this capacity, but poor planning and short‐term projects may be limiting their potential for health improvement. The assumption that mobile devices will solve problems that other forms of communication have not is also prevalent. In this context, understanding people's views and experiences may lead to firmer knowledge on which to build better programs. A qualitative evidence synthesis by Heather Ames and colleagues on clients' perceptions and experiences of targeted digital communication focuses on a particular type of messaging – targeted messages from health services delivered to particular group(s) via mobile devices, in this case looking at communicating with pregnant women and parents of young children, and with adults and teenagers about sexual health and family planning.[2] These areas of reproductive, maternal, newborn, child, and adolescent health (RMNCAH) are where important gains have been made worldwide, but there remains room for improvement. Ames and colleagues sought to examine and understand people's perceptions and experiences of using digital targeted client communication. This might include communication in different formats and with a range of purposes related to RMNCAH – for example, receiving text message reminders to take medicines (e.g. HIV medicines) or go to appointments (such as childhood vaccination appointments), or phone calls offering information or education (such as about breastfeeding or childhood illnesses), support (e.g. providing encouragement to change behaviours) or advice (such as advising about local healthcare services). These communication strategies have the potential to improve health outcomes by communicating with people or by supporting behaviour change. However, changing people's health behaviours to a significant and meaningful degree is notoriously challenging and seldom very effective across the board. There are a multitude of systematic reviews of interventions aiming to change behaviours of both patients and providers, with the overall objective of improving health outcomes – many of which show little or no average effects across groups of people.[3] This evidence synthesis is therefore important as it may help to understand why communicating with people around their health might (or might not) change behaviours and improve consequent health outcomes. By examining the experiences and perspectives of those receiving the interventions, this qualitative evidence synthesis allows us to better understand the interventions' acceptability and usefulness, barriers to their uptake, and factors to be considered when planning implementation. The synthesis looked at 35 studies from countries around the world, focussing on communication related to RMNCAH. Of the 35 studies, 16 were from high‐income countries, mainly the United States, and 19 were from low‐ or middle‐income countries, mainly African countries. Many of the studies presented hypothetical scenarios. The findings from the synthesis are mixed and give us a more nuanced picture of the role of targeted digital communication. People receiving targeted digital communications from health services often liked and valued these contacts, feeling supported and connected by them. However, some also reported problems with the use of these technologies, which may represent barriers to their use. These included practical or technical barriers like poor network or Internet access, as well as cost, language, technical literacy, reading or issues around confidentiality, especially where personal health conditions were involved. Access to mobile phones may also be a barrier, particularly for women and adolescents who may have to share or borrow a phone or who have access controlled by others. In such situations it may be difficult to receive communications or to maintain privacy of content. The synthesis also shows that people's experiences of these interventions are influenced by factors such as the timing of messages, their frequency and content, and their trust in the sender. Identifying key features of such communications by the people who use them might therefore help to inform future choices about how and when such messaging is used. The authors used their knowledge from 25 separate findings to list ten implications for practice. This section of the review is hugely valuable, making a practical contribution to assist governments and public health agencies wishing to develop or improve their delivery of digital health. The implications serve as a list of points to consider, including issues of access (seven different aspects are considered), privacy and confidentiality, reliability, credibility and trust, and responsiveness to the needs and preferences of users. In this way, qualitative evidence is building a picture of how to better communicate with people about health. For example, an earlier 2017 Cochrane qualitative evidence synthesis by Ames, Glenton and Lewin on parents' and informal caregivers' views and experiences of communication about routine childhood vaccination provides ample evidence that may help program managers to deliver or plan communication interventions in ways that are responsive to and acceptable to parents.[4] The qualitative synthesis method, therefore, puts a spotlight on how people's experiences of health and health care in the context of their lives may lead to the design of better interventions, as well as to experimental studies which take more account of the diversity that exists in people's attitudes and decision‐making experiences.[5] In the case of this qualitative evidence synthesis by Ames and colleagues, the method pulled together a substantial body of research (35 data‐rich studies were sampled from 48 studies identified, with the high‐to‐moderate confidence in the evidence for 13 of the synthesized findings). The evidence from this review can inform the development of interventions, and the design of trials and their implementation. While waiting for such new trials or trial evidence on effects to emerge, decision‐makers can build their programs on the highly informative base developed by this review. This qualitative evidence synthesis, alongside other reviews, has informed development by the World Health Organization of its first guideline for using digital technologies for health systems strengthening,[1, 6] part of a comprehensive program of work to better understand and support implementation of such new technologies.

Ryan R ，Hill S 《Cochrane Database of Systematic Reviews》

Unlocking data: Decision-maker perspectives on cross-sectoral data sharing and linkage as part of a whole-systems approach to public health policy and practice.

Tweed E ，Cimova K ，Craig P ，Allik M ，Brown D ，Campbell M ，Henderson D ，Mayor C ，Meier P ，Watson N ... -  《-》