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Co-Designing a Novel Service Delivery Pathway to Increase Access to Autism Identification and Care within a Non-Profit Community Organization Serving Culturally and Linguistically Diverse Families

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Title: Co-Designing a Novel Service Delivery Pathway to Increase Access to Autism Identification and Care within a Non-Profit Community Organization Serving Culturally and Linguistically Diverse Families
Language: English
Authors: Shana M. Attar (ORCID 0000-0001-6729-3379), Hannah Benavidez, Carol Gicheru, Colleen Alabi, Risho Sapano, Wendy L. Stone
Source: Autism: The International Journal of Research and Practice. 2025 29(8):2097-2110.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Peer Reviewed: Y
Page Count: 14
Publication Date: 2025
Sponsoring Agency: National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
Contract Number: UL1TR002319
Document Type: Journal Articles
Reports - Research
Descriptors: Delivery Systems, Identification, Autism Spectrum Disorders, Nonprofit Organizations, Community Organizations, Developmental Delays, Early Intervention, Access to Health Care, Multilingualism, Design, Language Minorities, Coping, Child Rearing, Partnerships in Education, African Languages, Foreign Countries
Geographic Terms: Africa
DOI: 10.1177/13623613251335702
ISSN: 1362-3613
1461-7005
Abstract: Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1476876
Database: ERIC
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  Value: <anid>AN0186601748;f9d01aug.25;2025Jul15.05:29;v2.2.500</anid> <title id="AN0186601748-1">Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families </title> <p>Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care. Early, specialized support is important for helping young autistic children learn and develop. However, families from different cultural backgrounds often find it challenging to access this early help. A university lab and a community organization worked together to create a new way for these families to access autism services. We used a co-design approach, which involves gathering feedback from a variety of people involved in autism care, including service providers, community leaders, caregivers, and autism experts. Twenty-three individuals participated in eight co-design sessions that were two hours each. Participants were from different language groups, including Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya. These sessions helped us identify five important factors important for improving access to needed services: being mindful about cultural differences between groups, empowering caregivers, providing information and support for accessing services, reducing stigma around autism, and ensuring the service is practical to use. Based on these factors, we developed a new pathway for families to access autism care. This new approach includes providing help in navigating the medical and educational systems and provides short, culturally appropriate advice for parenting and coping. This project shows how working together with communities can create more fair and effective ways to provide autism support.</p> <p>Keywords: autism; co-design; community-based; developmental delay; diversity; early intervention; healthcare access; multilingual</p> <p>Health inequities affect up to 40% of individuals living in the United States ([<reflink idref="bib41" id="ref1">41</reflink>]) and are well-documented in physical and behavioral health conditions including autism spectrum disorder (ASD or autism) ([<reflink idref="bib5" id="ref2">5</reflink>]; [<reflink idref="bib20" id="ref3">20</reflink>]; [<reflink idref="bib25" id="ref4">25</reflink>]; [<reflink idref="bib35" id="ref5">35</reflink>]; [<reflink idref="bib39" id="ref6">39</reflink>]; [<reflink idref="bib45" id="ref7">45</reflink>]). Autism is a prevalent, lifelong neurodevelopmental condition that manifests early in life and is associated with significant social communication challenges ([<reflink idref="bib1" id="ref8">1</reflink>]) and economic needs for both children and their families ([<reflink idref="bib8" id="ref9">8</reflink>]). A range of studies indicate that initiating autism-specific behavioral, educational, and medical services at very young ages (i.e. as early as 18 months) is most likely to optimize long-term well-being for this growing population ([<reflink idref="bib13" id="ref10">13</reflink>]; [<reflink idref="bib15" id="ref11">15</reflink>]; [<reflink idref="bib26" id="ref12">26</reflink>]; [<reflink idref="bib31" id="ref13">31</reflink>][<reflink idref="bib33" id="ref14">33</reflink>]; [<reflink idref="bib36" id="ref15">36</reflink>]; [<reflink idref="bib58" id="ref16">58</reflink>]). Yet, culturally and linguistically diverse (CLD) families—even those living in high-income countries such as the United States—experience increased challenges in accessing timely autism-specific identification and early specialized care, as well as less optimal health outcomes compared to non-CLD families ([<reflink idref="bib7" id="ref17">7</reflink>]; [<reflink idref="bib17" id="ref18">17</reflink>]; [<reflink idref="bib20" id="ref19">20</reflink>]).</p> <p>Accessing autism-specialized services requires families to progress through a multi-step autism identification and care pathway, and health inequities have been documented throughout the process. In comparison with non-CLD children, CLD children experience a lower likelihood of correct identification of early autism characteristics on standardized autism screening measures ([<reflink idref="bib12" id="ref20">12</reflink>]; [<reflink idref="bib25" id="ref21">25</reflink>]; [<reflink idref="bib34" id="ref22">34</reflink>]; [<reflink idref="bib45" id="ref23">45</reflink>]), a lower likelihood of referral by generalist healthcare providers to early intervention and diagnostic services ([<reflink idref="bib42" id="ref24">42</reflink>]; [<reflink idref="bib55" id="ref25">55</reflink>]), a higher likelihood of misdiagnosis as a behavioral concern rather than autism ([<reflink idref="bib39" id="ref26">39</reflink>]), an older age of autism diagnosis ([<reflink idref="bib10" id="ref27">10</reflink>]), and a lower utilization of autism-specific services ([<reflink idref="bib3" id="ref28">3</reflink>]; [<reflink idref="bib6" id="ref29">6</reflink>]). Overall, these disparities result in lengthy waits between initial recognition of autism characteristics and subsequent receipt of services ([<reflink idref="bib10" id="ref30">10</reflink>]), resulting in elevated parenting stress, increased child behavioral challenges, and reduced quality of life ([<reflink idref="bib4" id="ref31">4</reflink>]; [<reflink idref="bib16" id="ref32">16</reflink>]), even compared to families with non-autistic developmental concerns ([<reflink idref="bib16" id="ref33">16</reflink>]). Importantly, these delays impede access to autism-specialized care within the early childhood stage of increased brain plasticity ([<reflink idref="bib13" id="ref34">13</reflink>]) when appropriately specialized services are most likely to attenuate developmental challenges and reduce the need for more intensive, costly, and restrictive services later in life ([<reflink idref="bib13" id="ref35">13</reflink>]; [<reflink idref="bib14" id="ref36">14</reflink>]).</p> <p>In addition to the autism-specific inequities that families encounter in medical centers, CLD families also report negative experiences overall with traditional medical care facilities, such as poor communication with healthcare providers, medical mistrust, and perceived discrimination ([<reflink idref="bib11" id="ref37">11</reflink>]). As such, there is an urgent need for pathways to autism care that are outside of traditional medical systems. The "Swiss cheese" model of human error and accident causation ([<reflink idref="bib46" id="ref38">46</reflink>]; [<reflink idref="bib57" id="ref39">57</reflink>]) provides a potential framework for developing capacity for additional providers and settings to facilitate access to autism identification and care services for CLD families ([<reflink idref="bib46" id="ref40">46</reflink>]). In this model, each level within a health system is depicted as an individual slice of Swiss cheese, with the "holes" in the cheese at each level representing missed opportunities for support. Reducing the number of "holes" across subsequent slices of cheese thus has the potential to mitigate patient harm. Indeed, efforts to eliminate "holes" in early autism identification and care are underway, such as easing the implementation burden of adherence to the American Academy of Pediatrics recommended autism screening by developing digital screening procedures ([<reflink idref="bib9" id="ref41">9</reflink>]; [<reflink idref="bib38" id="ref42">38</reflink>]; [<reflink idref="bib51" id="ref43">51</reflink>]; [<reflink idref="bib52" id="ref44">52</reflink>]). Yet, another harm reduction approach is to develop additional protective levels within a system that prevent the opportunity for "holes" to align. The development of redundancy across levels within a system is the central solution proposed in the "Swiss cheese" model, as redundancy allows individuals who fall through "holes" in one level to be buttressed by another.</p> <p>A few protective levels outside traditional medical systems exist to support families through the multiple stages required for accessing early autism identification and care services. One approach is the use of non-specialist Family Navigators ([<reflink idref="bib5" id="ref45">5</reflink>]; [<reflink idref="bib23" id="ref46">23</reflink>], [<reflink idref="bib24" id="ref47">24</reflink>]) who coach caregivers of children with early autism characteristics through the identification and care pathway. However, because Family Navigators focus primarily on connecting families to services, such as autism evaluations ([<reflink idref="bib23" id="ref48">23</reflink>]) or early intervention ([<reflink idref="bib24" id="ref49">24</reflink>]), they rarely provide evidence-based coping or parenting strategies to families during the stressful time while waiting for these services to commence. In addition, Family Navigators are often assigned to caregivers following well-child checkups in primary care ([<reflink idref="bib5" id="ref50">5</reflink>]) which CLD families are less likely (or able) to attend ([<reflink idref="bib32" id="ref51">32</reflink>]; [<reflink idref="bib49" id="ref52">49</reflink>]). A second approach utilizes non-specialist peer mentors (e.g. Parent to Parent), in which caregivers of autistic children or non-specialist coaches provide and receive support from one another ([<reflink idref="bib37" id="ref53">37</reflink>]). However, peer-mentor programs are designed for caregivers of children who have already received a formal autism diagnosis. Thus, while research examining the effectiveness of the Family Navigator and peer-mentor approaches provides evidence that non-specialists can be leveraged to support families in accessing autism identification and care, a comprehensive system that offers both navigation and evidence-based coping and parenting support to CLD families in the period prior to an autism diagnosis is still needed.</p> <p>Evidence-based coping and parenting strategies exist to support caregivers of children with early autism characteristics, yet most of these materials either have not been culturally adapted or are not paired with navigation services. Several meta-analyses provide evidence that culturally adapted materials for CLD communities are more effective than those that are not culturally adapted ([<reflink idref="bib27" id="ref54">27</reflink>]; [<reflink idref="bib44" id="ref55">44</reflink>]; [<reflink idref="bib48" id="ref56">48</reflink>]). For example, the World Health Organization (WHO) developed the <emph>Caregivers Skills Training for families of children with developmental delays or disabilities</emph>, which has been used successfully in several countries ([<reflink idref="bib47" id="ref57">47</reflink>]). This program is led by non-specialist providers and includes sessions on communication, engagement, daily living skills, challenging behavior, and caregiver coping strategies. However, this program includes group sessions, does not offer navigation services, and requires a lengthy training course for the non-specialist providers. As such, there is an urgent need to adapt caregiver-focused coping and parenting materials for feasible dissemination in a novel pathway to autism care.</p> <p>Culturally embedded community-based organizations (CBOs) have the potential to serve as ideal partners and deployment settings for the development and use of new culturally sensitive navigation and educational materials for supporting access to early autism identification and care. CBOs serve specific cultural communities and are founded, led by, and staffed with individuals who are members of those communities. Programming at CBOs is therefore built on a foundation of shared cultural, religious, and national identities, histories, languages, and experiences. As such, CBOs frequently serve as an entry point for many underserved populations for accessing housing, vocational, educational, and health information more easily and comfortably than governmental or traditional medical facilities. Indeed, some CBOs already offer early childhood developmental monitoring to all caregivers with young children in their community using open-source tools such as the Ages and Stages Questionnaire ([<reflink idref="bib50" id="ref58">50</reflink>]). Our goal is to build upon these existing developmental monitoring programs by supporting CBOs to assist families with identified concerns in navigating through the autism identification and care pathways while also disseminating brief, culturally sensitive, and evidence-based parenting and coping strategies to support caregiver and child well-being as families wait for specialized services to commence. However, the features of such an alternative pathway that would best support CLD families in accessing services via culturally embedded CBOs remain unclear.</p> <hd id="AN0186601748-2">Method</hd> <p></p> <hd id="AN0186601748-3">Aim</hd> <p>The aim of this study is to use a collaborative, power-sharing approach to identify design considerations for developing a novel service delivery pathway that uses non-specialist providers outside of traditional medical centers to increase access to autism services for CLD families.</p> <hd id="AN0186601748-4">Design</hd> <p>We developed a community-academic partnership between the University of Washington (UW) Research in Early Autism Detection and Intervention (READI) lab and Mother Africa, a culturally embedded CBO that supports refugee and immigrant families from Africa and the Middle East. The UW READI lab and Mother Africa played equal roles in the development of study procedures and materials. Decisions throughout the study were informed and agreed upon by both parties.</p> <p>A co-design approach was used to identify the design considerations for our novel service delivery pathway. Co-design is an approach to service development that values the perspective of varied experiences in the development process. Important to the co-design approach is the active incorporation of feedback from front-line service users and end-users to increase the practical benefits and usability of the end product within target settings ([<reflink idref="bib54" id="ref59">54</reflink>]). In our co-design, researchers with expertise in autism, as well as community members with lived experiences (e.g. front-line providers, caregivers of autistic children), collaboratively developed our products, services, systems, and solutions for the community. Our process relied on teamwork, with community members contributing ideas, feedback, and expertise at all stages of development via shared communication strategies (e.g. regular meetings); see <emph>Phase 3: Co-Design</emph> for a more detailed description of our approach. Co-design principles are consistent with the National Institute of Health translational science principles, such as utilizing boundary-crossing partnerships ([<reflink idref="bib22" id="ref60">22</reflink>]). Within the co-design, a strengths-based neurodiversity-affirming approach informed the conceptualization and design of our materials.</p> <hd id="AN0186601748-5">Setting</hd> <p>Study activities took place in person at Mother Africa and the UW READI lab, as well as on Zoom.</p> <hd id="AN0186601748-6">Study participants</hd> <p>Overall, 23 individuals participated in the co-design: 2 Mother Africa leaders, 2 Mother Africa program supervisors, 7 Mother Africa non-specialist providers, 8 caregivers receiving services in various Mother Africa programs, 3 UW READI lab autism researchers, and 1 UW undergraduate student. The two program supervisors oversee the seven non-specialist providers in an early childhood screening program at Mother Africa. Each non-specialist provider speaks one or more of the following languages: Somali Mai Mai, French, Swahili, Amharic, Tigrinya, Arabic, or Dari/Pashto. The non-specialist providers are all refugee women living in the United States, and they support other refugees and immigrants from their native language group. For this project, each Mother Africa non-specialist provider recruited one caregiver from their language group to participate in the co-design. All participating caregivers had at least one child between the ages of 16 and 60 months and had some English fluency; two caregivers were parents of an autistic child. See Table 1 for characteristics of the co-design members.</p> <p>Table 1. Characteristics of the co-design members by organization and role.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="left">Organization</th><th align="left">Role</th><th align="left">Number</th><th align="left">Education</th><th align="left">Country of origin</th><th align="left">Age</th></tr></thead><tbody><tr><td rowspan="4">Mother Africa (A CBO)</td><td>Organization leaders</td><td>2</td><td>MA</td><td>Not collected</td><td>Not collected</td></tr><tr><td>Program supervisors</td><td>2</td><td>BA</td><td>Not collected</td><td>Not collected</td></tr><tr><td>Non-specialist providers</td><td>7</td><td>AA or BA</td><td>Not collected</td><td>Not collected</td></tr><tr><td>Mothers</td><td>8</td><td>AA or BA (many elected not to share)</td><td>Kenya (3), Afghanistan (1), Palestine (1), Democratic Republic of Congo (1), Rwanda (1), Eritrea (1)</td><td>20–45 years</td></tr><tr><td>UW READI lab</td><td>Autism specialists</td><td>4</td><td>PhD (1); PhD candidate (2); undergraduate student (1)</td><td>Not collected</td><td>Not collected</td></tr></tbody></table> </ephtml> </p> <hd id="AN0186601748-7">Study procedures</hd> <p>The study procedures comprised three stages: relationship building, goal setting, and co-designing the novel pathway.</p> <hd id="AN0186601748-8">Phase 1: relationship building</hd> <p>Mother Arica and the UW READI lab collaboratively decided to pursue this project after completing an initial partnership to develop a culturally sensitive screening tool for autism. Through that partnership, we learned of additional barriers to equitable autism identification, care, and outcomes directly from the Mother Africa's front-line service providers and families. These barriers included low knowledge of specific parenting strategies for managing autism-related behaviors at home, low knowledge of local autism resources, and high levels of caregiver stress. Mother Africa and the UW READI lab agreed to pursue a funding mechanism that champions academic-community partnerships, and that would allow both partners equal roles in the study. Our relationship with Mother Africa was built through shared values, close collaboration (e.g. weekly meetings), provision of funding support (e.g. allocating 60% of our intramural research funds for the CBO), and flexibility from both Mother Africa and the UW READI lab in responding to the needs of the other party. For example, Mother Africa agreed to alter our project timeline to provide additional time for the UW READI lab to develop tailored materials, and the UW READI lab expanded the materials to be appropriate for general developmental concerns (rather than autism only) to allow for wider use across the CBO.</p> <hd id="AN0186601748-9">Phase 2: goal setting</hd> <p>Mother Africa and the UW READI lab met four times over the course of three months to refine the study direction and goals. During this process, we identified co-design as our main approach toward developing a pathway to autism-specialized care within a CBO. Our goal was to pair the provision of navigation services that increase access to care with the dissemination of brief, evidenced-based parenting and coping strategies to support caregivers and children as they wait for services to commence. Visual supports and self-care were selected as the evidence-based parenting and coping strategies; these strategies were identified collaboratively with the co-design group. Visual supports involve a child-led approach to supporting participation in daily home routines that have built-in flexibility and can be modified to fit a child's needs and preferences ([<reflink idref="bib2" id="ref61">2</reflink>]; [<reflink idref="bib30" id="ref62">30</reflink>]). Self-care strategies were based on the WHO Caregiver Skills Training Program and focused on identifying and implementing caregiver-driven, culturally sensitive, and weekly activities that promote the well-being of caregivers through collaborative problem-solving ([<reflink idref="bib47" id="ref63">47</reflink>]).</p> <hd id="AN0186601748-10">Phase 3: co-design</hd> <p>Eight co-design sessions were held over a period of six months. Each co-design session was conducted in English and lasted two hours. The first and last session included the autism specialists and Mother Africa staff, and the middle six sessions included the autism specialists, Mother Africa staff, and caregivers. The autism specialists facilitated each meeting using a pre-set agenda developed in the prior session. The first session occurred in person at the Mother Africa headquarters; remaining sessions were hosted on Zoom to accommodate caregiver challenges, such as travel and childcare. Co-design sessions were not recorded to encourage caregivers and non-specialist providers to speak openly. Zoom breakout rooms were used to encourage discussion in small groups prior to sharing across all co-design members. The first seven sessions discussed development of materials to support the novel pathway to autism care, and the last session focused on developing a training program to prepare CBO staff for using the newly developed materials to support families. A 3-month break occurred between sessions 5 and 6 to allow the autism specialists to adapt existing materials and develop new materials before presenting them to the group for feedback. Detailed proceedings of each co-design session were written by the autism specialists. An autism specialist who was not involved in facilitating the discussion was assigned to write the proceedings each session. These proceedings were reviewed on an ongoing basis to categorize the key design features of the novel service delivery pathway as they emerged during the co-design process and generate topics for subsequent meetings.</p> <hd id="AN0186601748-11">Results</hd> <p>The co-design sessions revealed five key design features of an effective pathway that uses non-specialist providers to increase access to autism services for CLD families: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and promoting feasibility. These features informed the co-production of a modular and culturally sensitive workbook ("The Family Care Project") for use by CLD non-specialist providers with families, along with an associated self-paced, web-based tutorial to support non-specialist providers' use of the workbook. The primary goals for the Family Care Project workbook were to (<reflink idref="bib1" id="ref64">1</reflink>) increase caregiver knowledge and use of local autism and general developmental identification and care resources, and (<reflink idref="bib2" id="ref65">2</reflink>) increase caregiver use of evidence-based parenting and coping strategies to support both caregiver and child well-being as they navigate the early identification and care pathway.</p> <hd id="AN0186601748-12">Design considerations</hd> <p>The five key design features that were identified, as well as potential strategies for implementing them and examples of their use in the Family Care Project, are presented in Table 2.</p> <p>Table 2. Design considerations, suggested implementation techniques, and examples of their use in the Family Care Project.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="left">Design consideration</th><th align="left">Suggested techniques for implementing design consideration</th><th align="left">Example of technique in Family Care Project</th></tr></thead><tbody><tr><td rowspan="5"><bold>Respecting diversity</bold></td><td>Use language that is mindful about distinguishing between pathology and culture.</td><td>"We want to understand your child's development. We will talk about things your child is doing and things that you thought they would be doing but don't see yet."</td></tr><tr><td rowspan="3">Offer choices within content.</td><td>Some families value keeping preschool aged children at home. Local resources included options for home-based care.</td></tr><tr><td>Some families do not value using tangible reinforcements or reward systems. The content on rewards in the parenting strategies section includes several categories of rewards, including social activities (e.g. spending time with a favorite auntie) and verbal rewards (e.g. praise).</td></tr><tr><td>Some caregivers do not value participating in independent activities to bring themselves joy. The self-care module includes the option to brainstorm family activities that would bring the caregiver joy.</td></tr><tr><td>Use photos that display children from various backgrounds wearing a diversity of clothing.</td><td /></tr><tr><td rowspan="3"><bold>Prioritizing caregiver agency</bold></td><td>Offer choices between content topics.</td><td>"In a moment, we will read about the four different areas [of child development]. You will then choose which two areas are most relevant to your child and important for us to discuss today."</td></tr><tr><td>Offer support with connecting to a variety of local services and resources.</td><td>"Below is a list of services based on the age of your child. Remind me how old your child is? We will read the relevant services for your child's age and then place a checkmark in the box next to the service that you would like to be connected with today. If there is time, we will return to this list, and you can pick another system. You are welcome to reach out to more than one system."</td></tr><tr><td>Present workbook materials as evidenced-based strategies rather than directives.</td><td>"Today we will give you some tips for improving your child's behavior at home."</td></tr><tr><td rowspan="3"><bold>Increasing accessibility</bold></td><td>Translate all workbook materials.</td><td>Workbooks are available in Swahili, Tigrinya, Dari/Pashto, Arabic, French, and English.</td></tr><tr><td>Use plain language.</td><td>"Early Support is Important.There are ways of helping autistic children learn new behaviors. These supports work best when they are started before a child is five years old. This is called 'early intervention.'"</td></tr><tr><td>Use photos to illustrate child behaviors, such as imitation and imaginary play.</td><td /></tr><tr><td rowspan="5"><bold>Minimizing stigma</bold></td><td>Model self-disclosure.</td><td>"I will start by sharing about myself."</td></tr><tr><td>Explain how information families share about themselves will be used.</td><td>"Learning more about you and your family can help us figure out the best supports for your family."</td></tr><tr><td>Develop a relationship prior to offering suggestions for local resources or teaching evidence-based strategies.</td><td>The first session is devoted to learning about caregivers and their children.</td></tr><tr><td>Use validation.</td><td>"Anyone would be nervous about their child not speaking at age three."</td></tr><tr><td>Use language that minimizes stigma associated with mental and behavioral health.</td><td>Our service pathway and materials were titled "The Family Care Project" and do not include mental- or behavioral health-related words.</td></tr><tr><td rowspan="2"><bold>Maximizing feasibility:</bold> Minimize provider training needs.</td><td>Develop a step-by-step workbook that includes a transcript for non-specialist providers to read on each page of the workbook.</td><td>"Changing behavior is hard, even for adults! To help children improve their behavior, we want to reward them for doing what they are asked to do. Rewards are things (e.g. toys, activities, snacks, the attention of a loved one) that a child really enjoys. It is important to follow up using the visual support with a reward, so that a child feels motivated to change their behavior. Let's come up with a few different rewards for each of the categories listed below."</td></tr><tr><td>Use a task-shifting approach that assumes no supervision.</td><td>We developed an open-source, self-paced, and web-based training tutorial that is self-sustainable.</td></tr></tbody></table> </ephtml> </p> <hd id="AN0186601748-13">Respecting diversity</hd> <p>Co-design members represented a range of cultures, languages, and communities, and it was not possible to coalesce the wide variety of values and identities under a single design feature. Several strategies for representing this diversity were identified by the caregivers and non-specialist providers. In particular, co-design members suggested using language that is mindful in distinguishing between a range of cultural expectations for normative child development and pathology. For example, discussion of developmental milestones led to recommendations to frame this concept from the perspective of a caregiver's expectation for their child's development, rather than compare their child to a standardized timeline of milestone development. One example of our approach was to frame discussions using wording such as "We want to understand your child's development. We will talk about things your child is doing and things that you thought they would be doing but don't see yet."</p> <hd id="AN0186601748-14">Prioritizing caregiver agency</hd> <p>Co-design members emphasized the importance of allowing caregivers to be active agents in selecting the information they receive and services they choose to engage rather than passive recipients of curated information and services presented by experts. One strategy identified during the co-design process was to support caregiver agency by embedding choices throughout the workbook. The entire workbook was therefore designed to be used flexibly, such that after the first module, the order of the remaining three modules can be completed in any order, thus allowing caregivers to select the priority in the information and care they wish to receive. Consistent with a family-centered care approach, the idea of "parents as experts" informed all conversations regarding the role of caregivers and families in our program. As such, our program values collaboration between providers and families to ensure respect and dignity for families' perspectives, knowledge, and characteristics ([<reflink idref="bib19" id="ref66">19</reflink>]).</p> <hd id="AN0186601748-15">Increasing accessibility</hd> <p>Co-design members reported that community members have a range of fluency and literacy in English, as well as a range of literacy in their native languages. Plain language was recommended for use throughout all materials, including materials that were published in native languages.</p> <hd id="AN0186601748-16">Minimizing stigma</hd> <p>Non-specialist providers and caregivers reported that high levels of stigma were a central barrier to seeking healthcare services or discussing concerns about their families with others. Several strategies to minimize stigma and encourage participation in our program were identified, including modeling self-disclosure (e.g. a non-specialist provider disclosing that they have had concerns about their own children), validation (e.g. "It's understandable that you are concerned about your child not talking"), and rapport-building activities (e.g. devoting the first session to rapport-building conversation). The purpose of these strategies was to foster trust with caregivers, to normalize the experience of parental distress, and to normalize mental and behavioral healthcare-seeking behaviors.</p> <hd id="AN0186601748-17">Maximizing feasibility</hd> <p>The non-specialist providers felt that they would need substantial psychoeducation and clinical training before they would be comfortable facilitating discussions with families about sensitive topics (e.g. their children's development). At the same time, they indicated that a protracted training program would not be feasible or scalable for their organization. One strategy suggested by the autism specialists to support feasibility was to develop a step-by-step workbook that includes a transcript for non-specialist providers to read on each page of the workbook. See Figure 1 for an example of this approach.</p> <p>Graph: Figure 1. A Selection of Family Care Project Workbook Pages in English.</p> <hd id="AN0186601748-18">The Family Care Project workbook and the Family Care Project tutorial</hd> <p>The development of the Family Care Project workbook was informed by the five key principles listed above. The workbook was designed for use by the non-specialist providers with families. It was translated into five languages (i.e. Swahili, Tigrinya, Dari/Pashto, Arabic, and French; Somali Mai Mai is a spoken language, and this group requested that materials be printed in English) to be read aloud by the non-specialist providers. The Family Care Project workbook contains four modules that cover the topics of identifying caregiver concerns about their child's development, selecting and connecting with local resources, managing challenging child behaviors at home, and decreasing caregiver stress through self-care. Initially, we conceptualized the materials as having a focus on children with differences in their social-communication development and at elevated likelihood for autism. However, early feedback from the co-design revealed that developing a program to support children at elevated likelihood of autism alone was too specialized to be appealing for use at the organization level and to be relevant for a wide array of families they serve. As such, the target audience and topics covered in the curriculum were expanded to include families of children with broader developmental differences as well as autism. Table 3 describes the four modules, along with the aims, activities, and resources in each module, and Figure 1 illustrates a selection of Family Care Project workbook pages.</p> <p>Table 3. Title, aim, activities, and resources in the Family Care Project workbook by module.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="left">Module title</th><th align="left">Module aim</th><th align="left">Module activities</th><th align="left">Module resources</th></tr></thead><tbody><tr><td>Reflect</td><td>Identify specific behaviors a caregiver thought their child would be doing at his/her/their age but is not doing yet.</td><td>1. Discuss children's strengths and preferred activities.2. Complete a pictorial Behavior Development Survey to identify child behaviors the caregiver would like to see changed.2. Complete a Top Priorities worksheet to rank the identified child behaviors according to caregiver priority.</td><td>1. Learn about autism and developmental difference.2. Psychoeducation on milestones of child development.</td></tr><tr><td>Connect</td><td>Connect the family in-session with at least one local care provider who can address the behavior(s) that the caregiver identifies as wanting to change.</td><td>1. Learn about different services (e.g. Early intervention, Head Start, primary care providers) that support families in different ways.2. Learn how to contact a service of choice to receive the help that is most relevant to a caregiver.3. Adapt and role-play available scripts to prepare the family for contacting the service via email or phone.4. Contact the service during the session.5. Repeat with other services as desired.</td><td>1. A written description of different types of specialist providers (e.g. speech language pathologist, behavior analyst) who may work with a child.2. Descriptions and contact information for additional local services or activities that support children and families (e.g. language learning support, academic support, transportation support, community events).</td></tr><tr><td>Home life</td><td>Choose an evidence-based visual support to increase children's participation in home routines and activities (e.g. bedtime, toileting, bathtime, clean-up, transitions).</td><td>1. Explore obstacles a child faces in participating in home routines and activities.2. Understand how to pair visual supports with verbal directions to increase understanding of the steps in a routine.3. Develop a list of favorite activities (consistent with a caregiver's values) that could be used after children use the visual support to complete the routine (e.g. praise, time spent with a loved one).</td><td>1. A tracking sheet to monitor the use of the visual support at home.2. Additional evidence-based parenting strategies that support children at home (e.g. positive time, emotion coaching) that can complement use of the visual support.</td></tr><tr><td>Self-care</td><td>Explore ways to add activities a caregiver enjoys into their daily life to increase moments of joy during regular routines.</td><td>1. Generate a list of activities that bring a caregiver joy.2. Develop and commit to a plan to add activities that bring joy into a caregiver's routine.</td><td>1. A planning sheet to support scheduling and committing to a self-care plan.</td></tr></tbody></table> </ephtml> </p> <p>1 Psychoeducation and evidence-based parenting and coping strategies that were included in the workbook were adapted from sources including the Centers for Disease Control and Prevention developmental milestones website, the Youth Top Problems method ([<reflink idref="bib56" id="ref67">56</reflink>]), the RUBI Parent Training Program ([<reflink idref="bib2" id="ref68">2</reflink>]), and the WHO Caregiver Skills Training ([<reflink idref="bib47" id="ref69">47</reflink>]).</p> <p>In addition to the Family Care Project workbook, a four hour, self-paced, web-based tutorial was developed to support non-specialist providers' use of the workbook with families. The tutorial includes seven stages that guide non-specialist providers through effectively presenting workbook material to families. These stages generally include written materials, a role-play, and/or a video demonstrating a clinical skill (e.g. validation, positive reinforcement) which were created by the autism specialists or available open source, and brief quizzes that reinforce foundational concepts.</p> <hd id="AN0186601748-19">Challenges and facilitators to the functioning of the co-design</hd> <p>Several challenges and facilitators to the functioning of the co-design were noted by the autism specialists and Mother Africa program supervisors over the 6-month co-design period. For example, some co-design members were initially hesitant to share their experiences and perspectives in the co-design meetings. See Table 4 for a list of facilitators and challenges that arose in the co-design process and how we chose to strategically manage the challenges with important input from our co-design members.</p> <p>Table 4. Challenges and facilitators to the functioning of the co-design.</p> <p>Graph</p> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /></colgroup><thead><tr><th align="left">Challenge</th><th align="left">Example</th><th align="left">Strategy used to address challenge</th></tr></thead><tbody><tr><td>Facilitating communication within co-design sessions.</td><td>Some co-design members were initially hesitant to share their experiences and perspectives in the co-design meetings. Some caregivers' English fluency at times prevented them from sharing their perspectives during the meetings.</td><td>- Using breakout rooms for different cultural and language groups.- Using 'ice breakers' to encourage participation in a low-stakes manner.- Posting agenda and guiding questions to Zoom chat; encouraging co-design members' use of the Zoom chat during conversations.- Validating one aspect of a member's response regardless of its relevance to the topic at hand to reinforce participation.- Refraining from recording the sessions.- Frequently sharing how fortunate we are to learn from co-design members about their values, beliefs, and families.</td></tr><tr><td>Balancing responsibilities of co-design members.</td><td>Mothers in the co-design meetings were participating from home while also needing to care for family members.</td><td>- Hosting co-design on Zoom, which is familiar and accessible to caregivers.- Using 'WhatsApp' to communicate with caregivers and encourage them to return to the Zoom if possible.- Focusing each session on one topic to ease transition back into the specific co-design session if a caregiver needed to briefly step away to handle other responsibilities at home.- Sharing our screen or using the chat function to display current agenda items to support on-topic comments.- Compensating caregivers $25/h if they were present more than 50% of each session.</td></tr><tr><td>Managing timeline pressure from funders.</td><td>Difficult to include all strategies proposed in the co-design process into the service delivery model.Co-design process was slower than anticipated.</td><td>- Spending extra time for co-design process at expense of other study stages.- Collaboratively prioritizing suggested strategies that were more feasible or benefited the larger study goals.- Earmarking some strategies for a future effort.</td></tr><tr><td>Reconciling different visions</td><td>Co-design members requested general developmental information and services to be included in the pathway.</td><td>- Finding a synthesis or middle ground between the viewpoints.- Developing a new plan consistent with community needs.- Being clear about our limits in professional expertise while at the same time responding to the co-design members' requests.</td></tr><tr><td>Facilitator</td><td colspan="2">Examples</td></tr><tr><td>Developing a strong relationship between research team and the community partner organization.</td><td colspan="2">- Multiple meetings before project commencement.- Frequent check-ins regarding community experience with co-design process.</td></tr><tr><td>Employing knowledge and use of clinical skills to facilitate co-design.</td><td colspan="2">- Validation.- Collaborative problem-solving.- Differential attention.- Reinforcement.</td></tr><tr><td>Ensuring timely communication within organizations and between organization contact points.</td><td colspan="2">- Program supervisor had weekly meetings with each non-specialist provider to receive feedback on the co-design- Program supervisor and autism specialists met regularly to brainstorm strategies to increase engagement in co-design meetings- Agenda items and progress reports were shared following co-design sessions</td></tr></tbody></table> </ephtml> </p> <hd id="AN0186601748-20">Feedback on the co-design process</hd> <p>At the conclusion of the final co-design session, co-design members completed written responses to three open-ended questions about their experience participating in the co-design. These three questions prompted co-design members to reflect on what they liked most and least about participating in the co-design sessions, as well as suggestions for how the co-design sessions could be improved. All co-design members reported that they were very happy with participating in the development of a novel service delivery pathway and felt that their perspectives were heard and implemented throughout the workbook materials. One non-specialist provider reported that they most enjoyed "the collective participation and opportunity to express oneself freely and safely." All non-specialist providers also reported that they would recommend that other members of their community participate in a co-design in the future. Constructive feedback included that longer or more meetings would allow additional time for discussion. For example, one non-specialist provider mentioned, "I felt the sessions should have been a little bit longer to allow more conversations." Similarly, another non-specialist provider reported that because co-design is a new role for many participants, it is important to "not rush" the process.</p> <hd id="AN0186601748-21">Discussion</hd> <p>This article describes a collaborative, power-sharing approach for developing a novel service delivery pathway that uses non-specialist providers outside of traditional medical centers to increase access to autism services for CLD families in the United States. Key aspects of the Family Care Project were informed by the non-specialist providers and caregivers during the co-design, which highlights the benefit of using co-design as a strategy for developing new service delivery models or interventions. Similarly, other studies that have utilized a co-design approach have shown that incorporating the perspectives of service users and end-users in the design process increases the relevance and outcomes of the novel service.</p> <p>To our surprise, our use of a co-design expanded our perspective on the process of culturally adapting interventions and educational materials. Before the co-design, we assumed that the co-design would focus primarily on culturally adapting the content of the educational materials. What we learned from co-design participants, however, is that while cultural adaptation necessarily includes the adaptation of content so that it is appropriate and relevant for specific cultural groups, it must also encompass how materials are presented and delivered to CLD families (i.e. the process as well as the content). Indeed, three out of the five key design features (i.e. prioritizing caregiver agency, increasing accessibility, and minimizing stigma) focused on the presentation and delivery of information rather than on the content itself. Yet, while it is common for studies describing cultural adaptations to focus on adapting the content of the materials, attention to the presentation and delivery of services receives less attention ([<reflink idref="bib21" id="ref70">21</reflink>]; [<reflink idref="bib29" id="ref71">29</reflink>]; [<reflink idref="bib40" id="ref72">40</reflink>]).</p> <p>Co-design is an increasingly common process among researchers invested in supporting mental and behavioral health equity for CLD families ([<reflink idref="bib18" id="ref73">18</reflink>]; [<reflink idref="bib43" id="ref74">43</reflink>]). Across studies, factors that facilitate and challenge the quality of a co-design have been identified, and the facilitators were similar to those we encountered in our own co-design. Primary facilitators have been noted as relationship quality, communication quality, and shared goals ([<reflink idref="bib18" id="ref75">18</reflink>]; [<reflink idref="bib43" id="ref76">43</reflink>]; [<reflink idref="bib53" id="ref77">53</reflink>]). This is consistent with our experience, in which a strong foundational relationship between the autism specialists and Mother Africa allowed us to engage in collaborative problem-solving to manage obstacles—especially those related to communication within the co-design sessions and shared goals—as they arose.</p> <p>While we experienced some of the primary challenges that have been documented previously, such as timeline pressure from our funding source ([<reflink idref="bib18" id="ref78">18</reflink>]; [<reflink idref="bib43" id="ref79">43</reflink>]; [<reflink idref="bib53" id="ref80">53</reflink>]), we did not experience other commonly reported challenges, such as control struggles or unclear roles, which may be a result of having established our community-academic partnership prior to initiating this co-design project. In contrast, our main challenge was that there were differences in how some co-design members acclimated to the co-design process, which resulted in some members feeling uncomfortable participating in sessions and others popping in and out of each session as they balanced other activities. We hypothesize that perhaps there is a cultural aspect to the process of acclimating for a co-design participant in which co-design members from some cultural groups operate within a cultural code of interpersonal relationships that makes it more challenging to feel comfortable offering comments, suggestions, and feedback in the presence of health specialists, thereby remaining more deferential during early co-design sessions. This is consistent with research suggesting that the role of cultural codes impacts interpersonal relationships, especially those between healthcare providers and patients ([<reflink idref="bib28" id="ref81">28</reflink>]). Our strategies of frequently sharing how fortunate we felt to work with and learn from co-design members and our collaborative brainstorming and implementation of multiple strategies to encourage participation were helpful in supporting co-design members to develop comfort with their role as a co-design member. Thus, by the time of the final co-design meetings, we observed significant decreases in the number of members who were hesitant to share and found that members from all cultural groups were forthcoming in their feedback. Yet, in addition to employing these strategies, co-design members also asked for more and longer co-design sessions to allow them more time to become familiar with the new role of a co-design member and further clarify the nature of the position.</p> <p>In addition to facilitators and challenges, we also noted skills that emerged in participants throughout the co-design process. For the autism specialists, this often presented as developing skills in consistently and authentically prioritizing and responding to community provider and community member needs over other considerations (e.g. researcher agenda or preconceived ideas about possible solutions to a problem), especially when doing so required a shift in logistical or conceptual plans. For the non-specialist providers and caregivers, this often meant, as mentioned above, becoming more confident in sharing their opinions and perspectives. Over the six months of our co-design, we were able to witness how growth in these skills across co-design members allowed our team to develop a dynamic rhythm of co-production. This co-production was characterized by the synthesis of specialized autism and child development knowledge with rich cultural and contextual knowledge, thus enabling the development of our Family Care Project materials.</p> <p>Overall, we are optimistic about the novel service delivery pathway that resulted from our co-design. At the same time, our use of a co-design has several limitations. First, we did not collect formal data from co-design members about their experience in the co-design. Second, our co-design members included immigrants and refugees from eight language groups, which limits the generalizability to all CLD families. Third, co-design caregivers were required to have some English fluency, which may have excluded some important perspectives from the co-design group. Fourth, while we gathered perspectives from caregivers of autistic children who participated in the co-design, our co-design members did not include autistic self-advocates, which is an important consideration for future research regarding our program. Fifth, funding pressures due to the 1-year timeline of our pilot grant restricted the time available to dedicate to the co-design process. Finally, although we received feedback on the Family Care Project workbook from co-design members, its effectiveness and feasibility have yet to be rigorously examined. The next stage of our research is to complete a pilot feasibility study examining the feasibility, acceptability, and initial effectiveness of the Family Care Project for increasing access to autism-specialized and general developmental services for 35 CLD families across eight language groups.</p> <hd id="AN0186601748-22">Conclusion</hd> <p>Our study demonstrates the benefits and feasibility of using a co-design process to identify the design features of a novel service delivery pathway with front-line users, management leaders, and end-users from seven understudied cultural and linguistic groups. In particular, the five design features identified by our co-design members highlight the importance of attending to the delivery and presentation of psychoeducational materials and services for CLD families in addition to adapting the content. We also found that our previously established partnership between the research team and the community organization, and our dual commitment to an equitable, power-sharing relationship, allowed us to navigate challenges to the functioning of the co-design as they arose, thus enabling the creation of a safe space for sharing ideas and opinions for co-design members from a variety of cultures. Finally, our focus on leveraging culturally embedded non-profit community organizations as the setting for a novel service delivery pathway may serve as a model for improving healthcare access across a range of underserved and diverse populations and settings.</p> <p>The authors gratefully acknowledge the families and staff at Mother Africa who participated in this study.</p> <ref id="AN0186601748-23"> <title> References </title> <blist> <bibl id="bib1" idref="ref8" type="bt">1</bibl> <bibtext> American Psychiatric Association. (Eds.). (2013). 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Pediatrics, 136(Suppl. 1), S1–S9. https://doi.org/10.1542/peds.2014-3667B</bibtext> </blist> </ref> <ref id="AN0186601748-24"> <title> Footnotes </title> <blist> <bibtext> Shana M Attar: Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Writing—original draft; Writing—review & editing.Hannah Benavidez: Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Writing—original draft; Writing—review & editing.Carol Gicheru: Project administration; Resources; Writing—review & editing.Colleen Alabi: Conceptualization; Funding acquisition; Resources; Writing—review & editing.Risho Sapano: Conceptualization; Resources; Writing—review & editing.Wendy L Stone: Conceptualization; Data curation; Funding acquisition; Supervision; Writing—original draft; Writing—review & editing.</bibtext> </blist> <blist> <bibtext> The service delivery materials developed during the current study are available from the corresponding author upon request.</bibtext> </blist> <blist> <bibtext> The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.</bibtext> </blist> <blist> <bibtext> The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the Institute of Translational Health Sciences, funded by the National Center for Advancing Translational Sciences of the National Institutes of Health under award number UL1TR002319. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.</bibtext> </blist> <blist> <bibtext> This study was exempted by the University of Washington IRB Board on 2/14/2023 STUDY00017189 in accordance with the <emph>Belmont Ethical Principles</emph>. Participants completed written consent forms.</bibtext> </blist> <blist> <bibtext> Shana M Attar</bibtext> </blist> <blist> <bibtext>Graph https://orcid.org/0000-0001-6729-3379</bibtext> </blist> </ref> <aug> <p>By Shana M Attar; Hannah Benavidez; Carol Gicheru; Colleen Alabi; Risho Sapano and Wendy L Stone</p> <p>Reported by Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib41" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib20" firstref="ref3"></nolink> <nolink nlid="nl3" bibid="bib25" firstref="ref4"></nolink> <nolink nlid="nl4" bibid="bib35" firstref="ref5"></nolink> <nolink nlid="nl5" bibid="bib39" firstref="ref6"></nolink> <nolink nlid="nl6" bibid="bib45" firstref="ref7"></nolink> <nolink nlid="nl7" bibid="bib13" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib15" firstref="ref11"></nolink> <nolink nlid="nl9" bibid="bib26" firstref="ref12"></nolink> <nolink nlid="nl10" bibid="bib31" firstref="ref13"></nolink> <nolink nlid="nl11" bibid="bib33" firstref="ref14"></nolink> <nolink nlid="nl12" bibid="bib36" firstref="ref15"></nolink> <nolink nlid="nl13" bibid="bib58" firstref="ref16"></nolink> <nolink nlid="nl14" bibid="bib17" firstref="ref18"></nolink> <nolink nlid="nl15" bibid="bib12" firstref="ref20"></nolink> <nolink nlid="nl16" bibid="bib34" firstref="ref22"></nolink> <nolink nlid="nl17" bibid="bib42" firstref="ref24"></nolink> <nolink nlid="nl18" bibid="bib55" firstref="ref25"></nolink> <nolink nlid="nl19" bibid="bib10" firstref="ref27"></nolink> <nolink nlid="nl20" bibid="bib16" firstref="ref32"></nolink> <nolink nlid="nl21" bibid="bib14" firstref="ref36"></nolink> <nolink nlid="nl22" bibid="bib11" firstref="ref37"></nolink> <nolink nlid="nl23" bibid="bib46" firstref="ref38"></nolink> <nolink nlid="nl24" bibid="bib57" firstref="ref39"></nolink> <nolink nlid="nl25" bibid="bib38" firstref="ref42"></nolink> <nolink nlid="nl26" bibid="bib51" firstref="ref43"></nolink> <nolink nlid="nl27" bibid="bib52" firstref="ref44"></nolink> <nolink nlid="nl28" bibid="bib23" firstref="ref46"></nolink> <nolink nlid="nl29" bibid="bib24" firstref="ref47"></nolink> <nolink nlid="nl30" bibid="bib32" firstref="ref51"></nolink> <nolink nlid="nl31" bibid="bib49" firstref="ref52"></nolink> <nolink nlid="nl32" bibid="bib37" firstref="ref53"></nolink> <nolink nlid="nl33" bibid="bib27" firstref="ref54"></nolink> <nolink nlid="nl34" bibid="bib44" firstref="ref55"></nolink> <nolink nlid="nl35" bibid="bib48" firstref="ref56"></nolink> <nolink nlid="nl36" bibid="bib47" firstref="ref57"></nolink> <nolink nlid="nl37" bibid="bib50" firstref="ref58"></nolink> <nolink nlid="nl38" bibid="bib54" firstref="ref59"></nolink> <nolink nlid="nl39" bibid="bib22" firstref="ref60"></nolink> <nolink nlid="nl40" bibid="bib30" firstref="ref62"></nolink> <nolink nlid="nl41" bibid="bib19" firstref="ref66"></nolink> <nolink nlid="nl42" bibid="bib56" firstref="ref67"></nolink> <nolink nlid="nl43" bibid="bib21" firstref="ref70"></nolink> <nolink nlid="nl44" bibid="bib29" firstref="ref71"></nolink> <nolink nlid="nl45" bibid="bib40" firstref="ref72"></nolink> <nolink nlid="nl46" bibid="bib18" firstref="ref73"></nolink> <nolink nlid="nl47" bibid="bib43" firstref="ref74"></nolink> <nolink nlid="nl48" bibid="bib53" firstref="ref77"></nolink> <nolink nlid="nl49" bibid="bib28" firstref="ref81"></nolink>
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  Label: Title
  Group: Ti
  Data: Co-Designing a Novel Service Delivery Pathway to Increase Access to Autism Identification and Care within a Non-Profit Community Organization Serving Culturally and Linguistically Diverse Families
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  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Shana+M%2E+Attar%22">Shana M. Attar</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-6729-3379">0000-0001-6729-3379</externalLink>)<br /><searchLink fieldCode="AR" term="%22Hannah+Benavidez%22">Hannah Benavidez</searchLink><br /><searchLink fieldCode="AR" term="%22Carol+Gicheru%22">Carol Gicheru</searchLink><br /><searchLink fieldCode="AR" term="%22Colleen+Alabi%22">Colleen Alabi</searchLink><br /><searchLink fieldCode="AR" term="%22Risho+Sapano%22">Risho Sapano</searchLink><br /><searchLink fieldCode="AR" term="%22Wendy+L%2E+Stone%22">Wendy L. Stone</searchLink>
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  Label: Source
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  Data: <searchLink fieldCode="SO" term="%22Autism%3A+The+International+Journal+of+Research+and+Practice%22"><i>Autism: The International Journal of Research and Practice</i></searchLink>. 2025 29(8):2097-2110.
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  Label: Availability
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  Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
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  Label: Peer Reviewed
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  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 14
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
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  Label: Sponsoring Agency
  Group: SrcSuprt
  Data: National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
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  Label: Contract Number
  Group: NumCntrct
  Data: UL1TR002319
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Delivery+Systems%22">Delivery Systems</searchLink><br /><searchLink fieldCode="DE" term="%22Identification%22">Identification</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Nonprofit+Organizations%22">Nonprofit Organizations</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Organizations%22">Community Organizations</searchLink><br /><searchLink fieldCode="DE" term="%22Developmental+Delays%22">Developmental Delays</searchLink><br /><searchLink fieldCode="DE" term="%22Early+Intervention%22">Early Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Multilingualism%22">Multilingualism</searchLink><br /><searchLink fieldCode="DE" term="%22Design%22">Design</searchLink><br /><searchLink fieldCode="DE" term="%22Language+Minorities%22">Language Minorities</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Rearing%22">Child Rearing</searchLink><br /><searchLink fieldCode="DE" term="%22Partnerships+in+Education%22">Partnerships in Education</searchLink><br /><searchLink fieldCode="DE" term="%22African+Languages%22">African Languages</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Africa%22">Africa</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/13623613251335702
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1362-3613<br />1461-7005
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1476876
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1476876
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1177/13623613251335702
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 14
        StartPage: 2097
    Subjects:
      – SubjectFull: Delivery Systems
        Type: general
      – SubjectFull: Identification
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Nonprofit Organizations
        Type: general
      – SubjectFull: Community Organizations
        Type: general
      – SubjectFull: Developmental Delays
        Type: general
      – SubjectFull: Early Intervention
        Type: general
      – SubjectFull: Access to Health Care
        Type: general
      – SubjectFull: Multilingualism
        Type: general
      – SubjectFull: Design
        Type: general
      – SubjectFull: Language Minorities
        Type: general
      – SubjectFull: Coping
        Type: general
      – SubjectFull: Child Rearing
        Type: general
      – SubjectFull: Partnerships in Education
        Type: general
      – SubjectFull: African Languages
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Africa
        Type: general
    Titles:
      – TitleFull: Co-Designing a Novel Service Delivery Pathway to Increase Access to Autism Identification and Care within a Non-Profit Community Organization Serving Culturally and Linguistically Diverse Families
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Shana M. Attar
      – PersonEntity:
          Name:
            NameFull: Hannah Benavidez
      – PersonEntity:
          Name:
            NameFull: Carol Gicheru
      – PersonEntity:
          Name:
            NameFull: Colleen Alabi
      – PersonEntity:
          Name:
            NameFull: Risho Sapano
      – PersonEntity:
          Name:
            NameFull: Wendy L. Stone
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 08
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 1362-3613
            – Type: issn-electronic
              Value: 1461-7005
          Numbering:
            – Type: volume
              Value: 29
            – Type: issue
              Value: 8
          Titles:
            – TitleFull: Autism: The International Journal of Research and Practice
              Type: main
ResultId 1