Examining Health Literacy Among Families with Children having Disabilities
After working alongside families in India, both this past summer and during my first move to India, I have fully realized how different health services are revealed, explained, complied with, and utilized. I wanted to understand how families in India are receiving health information and plans of care for their child. Navigating healthcare systems as a family is difficult even with an average abled child or even a neurotypically developed child, but throwing in a complex genetic or neurologic diagnosis quickly turns difficult into almost impossible. Especially when a parent has low health literacy skills. I proposed to Fulbright a study that tell the families side of the story by observing their experiences with navigating health care providers, therapies, and public health care services offered in India.
In March of 2019, I was awarded a Fulbright Student Research Grant to return to India and completed this proposed project over the next year (Aug '19-Aug 20'). I am beyond excited to have this opportunity to return and gain a better understanding of the barrier families I work with at the clinic are facing. I plan to become a Family Nurse Practitioner and Disability Researcher. This experience from "the other side of the desk" will allow me an invaluable perspective of families trials and triumph in health care navigation.
Part of my grant is fulfilling a Critical Language Enhancement Award, to learn Hindi. I must be able to speak Hindi in order to engage with and form trust with the families participating in my study. I am very excited to spend three months of intensive study to become proficient in this new and different language. I will be posting about the beautiful process of an American learning a language with devanagari script instead of english characters... this should be quite a fun journey :)
I plan to keep this blog updated on my research progress, and I pray I am able to conduct this at a high enough proficiency to publish my results and make an impact on the world of disability advocacy as well as make an impact on the facilitation in navigating public health care systems.
My name is Maggie, but my family and friends have been calling me Dr.Mags since I started putting bandaids on my teddy bear. Now as a 25 year old, I have just received my BSN license from North Carolina. Nursing fulfills the passion I have felt for medicine and providing care to others. I began working alongside children with disabilities in high school with Rainbow Express Ministries and realized the complicated journeys many of these children and their families have to navigate that is unlike that of other acute illness. When I moved to India in 2015, I saw this same complicated health care process and the added complication of resource and knowledge deficiency surrounding disability. I am now following my heart as it guides me back to India to live and work to facilitate and advocate for early intervention services for children with special healthcare needs.