Lessons learned from a statewide needs assessment of Asian American families of children with developmental disabilities

Abstract

The prevalence of developmental disabilities (DDs) has increased in the past decades. As Asian Americans (AA) represent one of the fastest-growing racial groups in the U.S., it is likely that there are a large number of AA children with DD. Racial disparities among individuals with DDs have been well-documented, yet few studies have comprehensively examined AA parents’ experiences accessing diagnostic, therapeutic, or support services for their children with DD. This research gap exists, in part, due to the practical and methodological challenges in conducting culturally responsive research with AA families. In this ‘Points of View’ article, we describe our process of conducting a statewide, community-engaged needs assessment of AA parents of children with DD. We hope the lessons learned from this process will inform and promote future research engaging AA communities, and ultimately, help grow the body of evidence on underrepresented families of children with DD.

Introduction

The prevalence of developmental disabilities (DD) has increased from 16.2% to 17.8% from 2009 to 2017 (Zablotsky et al. 2019), and correspondingly, national statistics in the United States (U.S.) have reported a growing number of Asian American (AA) children with DD, such as autism (Centers for Disease Control and Prevention 2021). According to a recent scoping review, the small body of research focused on AA children with autism in the U.S. has primarily used qualitative methods and small samples (Kim et al. 2021). Yet, AA caregivers face multiple challenges, including limited knowledge of available services, lack of English proficiency, DD-related stigma, and scarce financial resources (Kim et al. 2021).

Considering that racial and ethnic inequities have been well-documented among individuals with DD (e.g. see Zablotsky et al. 2019), there is a compelling need to examine the healthcare experiences of AA parents of children with DD to inform culturally responsive interventions. For example, although the prevalence of autism across each racial/ethnic group is similar, white children are more likely to receive an early autism diagnosis than children of color, including Black, Latinx, and Asian children (Wiggins et al. 2020). For service use, among 117,848 children with autism enrolled in Medicaid, AA children received fewer outpatient autism-related services than white children (Bilaver et al. 2021). However, health researchers have noted challenges with engaging and retaining AA participants, which in turn, has resulted in their underrepresentation in the available literature (Lee et al. 2022). In response to this gap in the literature and as a precursor to intervention development, we collaborated with stakeholders and implemented a comprehensive needs assessment of AA parents of children with DD in Maryland, where 7.1% of the population identifies as Asian (US Census Bureau 2020). The purpose of this ‘Points of View’ article is to describe the development and dissemination of the community-engaged needs assessment and discuss challenges we encountered at each stage. The lessons we learned from the process can be particularly relevant for future culturally responsive research engaging underrepresented and underserved parents of children with autism and other DD in the U.S. The results of the needs assessment are reported elsewhere (Dababnah et al. 2022, Kim et al. 2022).

Description of the process

Stakeholder-informed survey development

The Institutional Review Board of the University of Maryland, Baltimore approved this research. We assembled a national advisory board of ten disability researchers, the majority of whom (70%) were professionals who identified as East, South, or Southeast Asian and represented several Asian countries (China, India, Japan, South Korea, and the Philippines). Guided by the multilevel Behavioral Model of Health Services and Access to Care model (BMHSAC; Andersen 1995), we developed a survey that included questions on the diagnostic process, clinical and community services, parents’ beliefs about DD, coping processes, and perceptions of community views. The survey also evaluated participants’ satisfaction with the needs assessment process itself. We revised the survey based on feedback from the advisory board, two community advocates, and two AA parents of children with DD. In addition to English, professional translators translated the survey and study information sheet into four languages commonly spoken by Asian populations in Maryland (Mandarin Chinese, Japanese, Korean, and Vietnamese). Since immigrants of Indian origin are typically conversant with English, we did not translate the surveys into Hindi or other languages. In May 2020, we added four questions on the COVID-19 pandemic. Figure 1 illustrates each step of the statewide needs assessment process.

Figure 1.

The process of the statewide needs assessment.

Recruitment and community outreach strategies

We used several recruitment strategies to systematically reach out to our target populations in Maryland. Below, we describe our outreach efforts to various stakeholder groups, then describe our shift from in-person to remote community engagement with the onset of the COVID-19 pandemic.

Recruitment methods by stakeholder group

The research team contacted local agencies that provided services to families or individuals with DD in each Maryland county, aiming to cover all regions in the state. We also reached out to organizations serving individuals with specific DD, such as Down syndrome, intellectual disability, autism, and cerebral palsy. Additionally, we advertised the study information by creating a Facebook page. Several local and statewide organizations posted our study information on their Facebook pages or websites.

Secondly, we targeted public schools in each Maryland county. We also contacted special educators and other public school system representatives across the state. Thirdly, we connected with AA-specific service organizations, religious institutions, language schools, and other related groups with large AA members. In addition to general AA-serving organizations and those focused on the largest Asian ethnic groups in Maryland (i.e., the Chinese, Filipino, Indian, Korean, Japanese, and Vietnamese communities), we also reached out to agencies, specifically serving the Burmese/Myanmarese, Cambodian, Nepalese, Pakistani, and Thai communities based on Maryland stakeholders’ recommendations, via phone calls and emails.

Lastly, we utilized our own connections with local communities and support groups to distribute study information. Research team members facilitated outreach to local Chinese and Korean support groups, who helped us to disseminate study information to other eligible parents. In addition, Filipina, Indian, and Japanese advisory board members and a local Vietnamese community agency assisted and advised us on connections to these ethnic groups in Maryland.

Shift from in-person to online community engagement

In the early months of our study, we held or attended several in-person events, including a non-profit autism group’s fundraiser, a local conference for family advocates and providers, a community board meeting, and school-based activities. After the COVID-19 outbreak in the U.S., we were limited to recruitment through social media, phone, or email. We struggled to reach several ethnic communities, including Filipino, Japanese, and Vietnamese families.

Data collection

We collected data from September 2019 to July 2020, mainly online using Qualtrics, a secure survey portal. We also mailed hard copy surveys to participants upon request. Participants received a $20 gift card after completing the survey. Despite its convenience, the online survey introduced a major challenge as well. In the first 2 weeks after we opened the survey, we received many spam responses (140 within the first three days). Thus, we implemented several strategies to evaluate quality. First, we used the duration recorded by Qualtrics to filter all responses, excluding responses that took <20 min as the average survey duration was 60 min. Second, we examined internet protocol (IP) addresses recorded by Qualtrics to verify if the submissions were from Maryland. Lastly, we duplicated two questions: (1) Which county do you live in? and (2) Who was the first person you told about the [child’s] diagnosis? Participants chose from a list of potential people (e.g. ‘spouse’) in the screening section and the main questionnaire, and then we cross-checked if the responses matched.

Results and dissemination

Through the extensive recruitment and data collection efforts described in the previous sections, 73 respondents completed the online survey. Although this sample size is arguably small for online studies, the scarce published literature documenting the needs of AA families, especially in the context of the COVID-19 pandemic, underscores the significance of our findings. Whereas these results have been shared through other dissemination outlets (Dababnah et al. 2022, Kim et al. 2022), the aim of this article is to share our process and lessons learned from partnering with AA communities and other stakeholders to better understand the needs of AA children with DD.

In summary, among the 73 AA parents who completed the survey, the majority (88%) were mothers, 53.4% identified as Chinese, 20.5% as Korean, and 6.8% as Indian. Almost all of the participants (91.8%) were born outside of the U.S. The parents reported on children (mean age: 8.3 years old; SD = 3.6) who most commonly had autism (57.5%) or attention-deficit/hyperactivity disorder (ADHD; 27.4%); other diagnoses included developmental delay (18%), intellectual disability (15%), Down syndrome (14%), and cerebral palsy (1%).

We disseminated peer-reviewed articles of our results, as well as a full-length report and research briefs virtually to our advisory board, stakeholders, local agencies, and wider audiences through Facebook. The research briefs included a six-page document for service providers, as well as a one-page summary presented in lay language for parents and community advocates. We translated the one-page document into 15 Asian languages. The full research report and briefs are available publicly online: https://www.ssw.umaryland.edu/aans/.

Our dissemination strategies corresponded with participant feedback. They recommended that by publicizing study findings, local communities will have a better understanding of DD and provide more community support and services for AA parents of children with DD. For example, one parent said in a comment at the end of the survey:

I think it’s important to spread awareness to non-English speaking (or ESL) Asians in the U.S. and use the media they are exposed to spread that awareness (e.g., foreign language cable channels, newspapers, Facebook, etc.). With awareness, they may become better community supporters.

Lessons learned and recommendations for future studies

Research rooted in social justice must pay more attention to unheard voices from racially and linguistically minoritized populations. However, AAs are often categorized as a ‘hard-to-reach’ population (Lee et al. 2009). Additional factors, such as DD-related stigma and the ‘model minority’ stereotype can contribute to further marginalization of AA families of children with DD (Kang-Yi et al. 2018). Although conducting this statewide need assessment was time-consuming and challenging, the process was critical in connecting researchers with local communities and helping to elevate the voices of AA families of children with DD. One participant’s comment, in particular, highlights the significance of including the voices of marginalized families in research. The participant said:

I’m glad to see this research. We are an undeserved community - no one believes that Asian children could be anything less than “smart.” My husband and I are the children of immigrants, we’re highly educated. So a [DD] diagnosis hit us like a ton of bricks. This wasn’t the future we have envisioned. It’s the kind of diagnosis that crumbles you and humbles you. It simultaneously challenged and strengthened my faith in God.

We hope our experiences can be beneficial to DD researchers pursuing more inclusive and culturally responsive methods to engage study participants. Thus, in the following paragraphs, we summarize lessons learned and recommendations from this needs assessment, with particular attention to the intersection of race, disability, and immigrant status.

First, building reciprocal and sustainable partnerships with local agencies is the foundation of community-engaged research. Community partnerships can facilitate participant recruitment and community buy-in (Katigbak et al. 2016). We collaborated with a Chinese community center and co-hosted workshops on parenting children with DD and available resources; and following the workshop, many parents were interested in completing our survey. This example highlights how community-engaged research can build trust and yield mutual benefits. We found that collaborating with local agencies was one of the most effective recruitment strategies. Future research can consider hosting virtual events, such as webinars and online support groups, to engage families and community advocates.

Consistent with past research with other racially and ethnically minoritized groups (e.g. see Shaia et al. 2020), a second major lesson we learned is that an ethnically diverse research team can facilitate engagement with underserved racial minority groups. Given AA families are a heterogeneous group with varying cultures, languages, and immigration histories (Hasnain et al. 2020), researchers with diverse ethnic backgrounds can help to identify the unique strengths and challenges faced by target populations and bridge the research-community divide. We recommend that future studies thoughtfully consider the representation of their research team and advisors to include a diverse group of AAs.

Thirdly, online data collection can be both efficient and challenging. An online survey offers participants greater privacy and confidentiality, which are important benefits in communities with high levels of DD-related stigma. However, advertising the study information online resulted in a spike in spam responses. We recommend researchers develop systematic quality-check methods before launching online surveys. In addition, distributing study information through known channels (e.g. a partner organization distributing the flyer through their listserv, community events, parent-to-parent) was a more efficient way to gather valid data.

Finally, we note that survey length is an important factor influencing completion rate and data quality (Saleh and Bista 2017). Although the majority of survey respondents reported they were satisfied with the survey questions (85%) and the survey length (84%), participants took more than 1 h on average to complete the survey based on our Qualtrics records. Future research must weigh the pros and cons of shorter surveys that explore fewer topics, yet place a lighter time burden on families who already contend with significant time constraints.

Conclusion

To our knowledge, this is the first statewide needs assessment of AA families of children with DD. We believe the community-engaged process we undertook was a positive and culturally responsive approach to begin to systematically identify the needs of AA parents when they seek DD services and support for their children. Sustained collaborations with local AA or disability-related community organizations, along with ongoing feedback from parents and other key stakeholders, are critical for future community-engaged research and culturally relevant intervention development. It is our hope that the lessons we learned from this process will assist future disability researchers to better engage AA and other minoritized populations, and in turn, offer them support and interventions aligned to their specific needs. Collectively, these efforts will promote the inclusion of marginalized voices in the literature and the implementation of culturally informed and responsive research and practice.

Funding Statement

This study was supported by grants from the Maryland Developmental Disabilities Council and the University of Maryland School of Social Work (PI: Dababnah).

Geolocation information

We conducted this research across the state of Maryland, a state on the east coast of the United States of America. Maryland’s latitude is 39.045753 and its longitude is −76.641273.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.