IAP Health: Jeffrey Kwon (’26)
Through the PKG Center, I had the opportunity to work at the Boston Medical Center (BMC) to assist with the various needs of the Autism Program this IAP.
Although the greater Boston metropolitan area is served by several hospitals, BMC has a unique patient population that differentiates it from others. According to BMC, three quarters of patients
at the medical center can be identified as those from underserved communities, such as those who are socioeconomically disadvantaged (e.g. those who may have “low-income”) and those dependent on subsidized healthcare. Cognizant of such barriers that community members might face, BMC has sought to invest in their well-being by taking extensive initiatives to address the root causes of inequitable health outcomes, providing aid in acquiring housing and access to
transportation being two of many ways the center has engaged in preventive medicine.
Within BMC, under the Department of Behavioral Pediatrics, is the Autism Program. Educating caregivers on how to cope with autism diagnoses for their children and connecting these caregivers with both internal and external resources for support in their journey, the Autism Program’s work has been crucial in empowering both caregivers and their autistic children.
I had the privilege of being assigned to the Program Operations team in the Autism Program. We honed our efforts on collecting qualitative feedback from caregivers about their experiences with BMC. Funded entirely by external support, the Autism Program sought to gather quotes for depicting the meaningful work of the program to donors and engaging in outreach to those who might find the resources offered useful.
In addition, I helped with other needs of the Autism Program, such as conducting Autism Support Checklist (ASC) calls to caregivers to collect information facilitating patient visits, as well as entering patient data into the Autism Database.
Qualitative feedback was mainly collected through interviews over Zoom. A total of 18 caregivers were initially contacted, of whom a total of 7 people had agreed to participate. Interviews were conducted across three languages – English, Spanish, and Portuguese – and were completed either over Zoom or through filling out an online form.
The project resulted in a quotes document gathered from combing through both the transcribed interviews and the single response we had received on the online form. This was the end goal of the project from the start, which meant that my initiative was successful with regards to completing the undertakings I had planned to take on. However, I feel that I could have been more proactive in contacting those who did not respond, possibly reaching out to caregivers contacted an additional time to make sure that I had not inadvertently reached out at an inconvenient time.
Furthermore, I faced difficulties in two main areas: translation and transcription. Attempting to cover a breadth of community members’ perspectives, I viewed contacting even those I did not speak the same language with as a crucial task for portraying the true scope of the Autism Program’s work. However, it was difficult finding interpreters to help me conduct interviews, and it was not a trivial task having to translate correspondence with caregivers in their native languages. Furthermore, transcribing the interviews by hand was not a small task, with some
interviews taking over an hour to convert into written scripts. Nonetheless, I am grateful for those who helped me, such as the program staff member who helped translate an entire conversation, in addition to my supervisor, Shari, who provided me with clear goals set out for each week in order to make progress on the initiative. Moreover, while using Google Translate
took time, it was still indispensable, having much better functionality than expected. The caregivers seemed to understand the requests I had made with the translations produced, meaning that I had communicated my points effectively.
In the short term, it may be difficult to immediately see that the project I did had a broad, positive impact. At surface level, I merely interviewed seven people about their experiences working with and receiving support from the Autism Program at the Boston Medical Center. Even within a short time frame, however, it seems that this doubt I had about my work is not entirely accurate. Many of the people I interviewed appreciated that someone took the time to reach out to them to talk about their journey having a child with autism, the interviews providing a space for their unique, authentic stories to be spotlighted for the greater Boston Medical Center community. Looking beyond the horizon, however, these stories one day may be what give courage to parents experiencing fear and anxiety about raising an autistic child to seek the BMC’s Autism Program for receiving support or what gives donors the reassurance that their
contributions are being spent prudently.
With regards to the other work I did apart from the project with the Program Operations team, such as making ASC calls, there is a clearer impact. By identifying the unique needs of patients, I expect that my contributions will enable smoother visits to the hospital for patients with autism, the notes that I made hopefully being considered by clinicians when they visit BMC in the future.
Even within the community of staff in the Boston Medical Center, I believe my work had an impact on those in the Autism Program. By taking on the task of gathering qualitative feedback about the work of the Autism Program, I enabled those such as Shari to work on other projects
for advancing the cause of the program, helping widen the scope of its work.
At a purely professional level, I was able to learn what it was like to work in a hybrid setting, now being held accountable for my own schedule as I navigated completing my tasks both on campus and in person at Boston Medical Center. Furthermore, I was able to rekindle my interest
in pediatrics upon seeing the physicians at BMC, whose dedication to considering the unique socioeconomic backgrounds of patients when providing care was inspiring.
Reflecting on the meetings with the caregivers, the most influential part of my experience, I realized that learning to deal with Autism Spectrum Disorder (ASD) is not only difficult for the children who may have difficulties communicating with others. The experience can also be fraught with feelings of solitude for parents, also bearing the brunt of an autism diagnosis, who may feel that the lack of resources and support for autism is discouraging.
My “a-ha moment” came upon seeing the caregivers reflect on their own journeys of raising children with autism diagnoses. Though each story was unique, each guardian coming from different walks of life, the common thread that linked many of the experiences seemed to be that
many caregivers now felt empowered to help others upon having received the support they needed to thrive, at the Autism Program. The empathy of the caregivers was apparent; many were propelled into action to pay forward the help they received, allowing me to recognize the
significance of the Autism Program’s work extending beyond traditional medicine. The stories of those in marginalized communities also prompted me to consider obstacles to accessing quality healthcare, especially regarding the lack of resources in one’s native language that compound the
difficulty presented by an autism diagnosis.
Looking at a short time frame, I expect that the benefit of the experience will have been more personally fulfilling than for the greater Boston community and the population that BMC serves. That is not to say that my work had no impact on the community, as enumerated before, but my
experience at the Autism Program proved invaluable for me to learn more about ASD as well as to reassess and refine the reasons I wanted to go into medicine. Medicine as a field empowering people to have full agency over their lives is now a value I expect to hold onto as I explore the
various ways I will be able to make contributions in the communities I serve.
As time goes on, however, I expect the balance of my work’s impact to gradually shift more to the greater Boston community. As mentioned, the quotes I helped collect, the patient data I helped record onto the Autism Database, and the ASC calls I made are all an investment that are
expected to return dividends in the long run. As more people are made aware of the Autism Program’s resources and more healthy patient-clinician relationships are made, I hope to one day revisit BMC to see the fruition of my efforts made this IAP.
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Tags: Health, Health & Medicine, IAP Health, IAP Health 2023