MY INTERNSHIP
My LHSI site is currently working towards creating a culturally and linguistically adapted Early Autism Evaluation Hub (EAE) called Hub- Spanish in Indiana. The EAE Hub sites are an innovative state-wide initiative to lower the age of autism diagnoses by training primary care providers (PCPs) to provide streamlined diagnostic evaluations for young children ages, 14-48 months, at risk for autism spectrum disorder (ASD). Since 2012, over 4700 young children have been evaluated in the EAE Hubs. However, the current Hub system has not been validated for children from non-English speaking homes. Due to the need to provide equitable services to all children in the state, my site has been conducting research on culturally and linguistically adapting the EAE Hub model. The first step of the adaptation process included interviews and focus groups with clinicians, social workers, and Spanish-speaking caregivers to get their views on the disparities faced by the Latinx community. Some of the challenges that the Latinx community experience include limited resources in Spanish, very few Spanish- speaking evaluators, and receiving quality interpretation services. This feedback will be used to inform Hub-Spanish to fit the needs of what the Latinx community in a relevant and meaningful way. This is important to our state because the second most common languages found in Indiana and in the United States is Spanish. The Latinx community, is one of the largest demographics in Indiana and is rapidly growing. Thus, it is important to make resources and autism evaluation and care centers more accessible to this community.
Credit: Pixabay/CC0 Public Domain
Abstract
The Latinx community experiences disparities accessing autism spectrum disorder (ASD) diagnostic and intervention services. Research suggests language proficiency and limited ASD knowledge contribute substantial amounts of caregiver stress when receiving an ASD diagnosis and navigating post- diagnostic care. This project describes the experiences of Spanish-speaking Latinx caregivers in obtaining an ASD diagnosis for their child and whether demographic factors influenced responses on a caregiver- report survey.
Participants were 12 Spanish-speaking Latinx mothers (M= 41 years, SD=4; M=17 years in US, SD=9; 67% limited or no English proficiency) of 13 children with ASD (M=12 years SD=4; 77% male; 33% mild, 58% moderate, 8% severe ASD impairment) who completed a survey on experiences obtaining an ASD diagnostic evaluation (86 items across 8 domains rated on 4-point Likert scale: “definitely disagree” to “definitely agree”) and demographic questionnaire.
Results suggest that Spanish-speaking Latinx communities experience challenges in evidence-based information about ASD and access to post-diagnostic services. These findings highlight the need to develop “plain-language” resources on ASD, obtaining a diagnosis, and next steps information. Spanish-speaking families would also benefit from improved care navigation post-diagnosis.
Final Project
Learning Skills
Throughout my LHSI internship experience, I hope to learn more about qualitative data processing, and I want to continue learning about the qualitative transcription process. I also want to help recruit participants for participatory research models. I would like to learn how to develop themes while coding and develop ways to transcribe interviews at a steady rate. I would also like to accurately transcribe and code from English to Spanish.
I would also like to gain confidence when it comes to speaking to caregivers, clinicians, and social workers. I want to freely speak to caregivers in Spanish and be confident in what I am saying. I also want to better present myself during interviews and team meetings. I often struggle to describe myself as a student, and I would like to have a better elevator speech about myself. Overall, I would like to gain more proficient speaking skills when talking in group settings.
I am most excited about contributing to the bigger picture and helping families that come from a similar background as I do. I enjoy being able to use my native language at my LHSI site, and I am working on improving my Spanish throughout this experience.
In the past few months, I have been exercising my communication skills and have started to learn when to ask for help. Most of my work is independent work, and I have learned to communicate with my supervisor when I have too many competing priorities. My time management skills have also improved, as a result of this internship. As I described earlier, most of my work is done independently and remotely, therefore, I have had to block out certain times throughout my week to code and transcribe interviews. The process is very long, and I have had to learn how to better manage my time to finish transcriptions.
My contributions to my internship impacted the project greatly. In addition to conducting satisfaction interviews with supervision support, I am in charge of keeping notes during interviews and focus groups, and transcribing audio files both in English and in Spanish. Without these transcriptions there would be no data to analyze or be able to use for our community improvement research purposes. We need to analyze data to then see where we can make the greatest impact in adapting Hub-Spanish, and to identify other areas in autism care that can be improved upon.
After completing the self-evaluation, I would like to improve on my communication skills. Moreover, I would like to improve my professional language and grammar skills. Although I conduct the majority of my daily educational and professional interactions in English , my family does not speak much English, and my first language was Spanish, so I feel that is an area of growth and continued development. I would like to continue practicing my communication skills at conferences, networking events, and at my internship site.
This internship has taught me so much thus far, and I can connect what I am learning in class to what I am learning through the internship. I am currently taking a science writing course and I have been able to further my learning about science and writing through different tasks done in my internship.
I am very content with what I have learned this semester through my site. I have learned more about how to interpret data and how to use different softwares to analyze and draw meaningful information from data. I have also learned how to create data tables and how to interpret content on a table. Additionally, I learned new terms related to research findings. My favorite experience thus far has been the opportunity to talk to different Spanish-speaking parents. I have enjoyed hearing their stories and hope that my site’s research will benefit them greatly in the future.
I have recently learned how to build a poster for the IUURC and the mechanics of formatting as well as maximizing available space on a poster to provide the most relevant information in a visually appealing way I have also learned how to revise a conference abstract submission and pinpoint key details needed for a high impact abstract, including: introduction, methods, results, and conclusion. I also engaged with the IUURC and presented my poster with other undergraduate peers in the school of medicine who engage in research. I am excited to give my elevator speech and to learn how to present a poster to individuals who visit my poster and have an interest in my research findings.
My internship was also able to aid me throughout my research course taken this semester. There are several aspects of research that I learned throughout this internship and was able to apply to my current course. I am able to better analyze a scientific publication, analyze data, transcribe interviews, and create/present research.
The Workplace
My internship team is great and they have shown skills I want to execute one day. I have attended our weekly research team meetings and I have noticed that the team is very open when discussing research. They are open to discussing any concerns or issues they are currently having with any of the projects that are in production. They receive feedback very well, and they work collaboratively as a team for the benefit the projects. I would like to be able to share my personal concerns and give feedback without feeling timid. I would like to be more confident in the workplace and better connect with my supervisors and internship team.
My internship team is a small one, and there are few interns that I get to see, but regardless of that, I have enjoyed working independently (something I was not expecting). I am one of two LHSI interns at my site, and I am the only intern in this specific research role as part of Hub-Spanish. That being said, I have learned how to pace myself and how to accomplish tasks independently and in a timely manner.
I have enjoyed my workplace, and it has been a welcoming and diverse environment from the start. Although I work with a culturally diverse team everyone takes part in appreciating my culture and those of others. I truly appreciate that and have learned so much about the culture of others throughout my time at my internship site. There are not many differences between my current internship site and my ideal workplace. I want to work at a place that appreciates my Latine culture, and strives to not only uplift my people but other underrepresented and minoritized communities as well.
Successes and Challenges
One of my greatest successes in this internship site so far was learning how to use the SPSS data software. I have little to no experience working with online software and no experience working with data software. I was more than proud of myself when I was able to analyze data, and create a table using the data results. My internship team played a great part in this success and taught me all that I needed to know about SPSS analytic software. I also recently learned how to use NVivo, which is a qualitative analysis software that allows researchers to import and organize data to find key information for research. I learned to code different clinican interviews and categorize criteria such as, patient mix, demographics, etc.
Indiana University Undergraduate Research Conference
Another great success of mine was conducting a phone interview on my own. I was able to contact the caregiver and ask them questions from our caregiver interview moderator sheet, and take notes of the entire interaction. Another success was participating in the IUURC back in December. I have never presented information or a poster before, and the IUURC granted me an opportunity to do so. At the IUURC I was able to sit in on different presentations and learn about the various research projects in Indiana and on the Indiana University campus.
Purdue Autism Research Conference
A growing moment for me was at the PARC at Purdue University. The conference was full of people who specialize in this field, so I felt more of a challenge when presenting my poster during the poster session. I was asked plenty of questions, and had to learn how to respond in a timely manner and how to respond with the best information. I was also judged by a board of judges and presented my poster several times. After this conference I lost a bit of my "stage fright" and have improved my elevator speech on the research/project. Although the poster session was a bit out of my comfort zone (compared to the IUURC), I was able to learn more from the different specialists in attendance. I also was awarded "Best Research emphasizing Diversity, Inclusion, and Equity." I believe my passion for the project shined throughout my poster session.
