For parents of children with special needs, finding qualified care providers can be a challenge—meaning that opportunities to de-stress and get away (even just for a dinner out) are rare. As a result, stress levels can skyrocket—and the whole family’s health and well-being can suffer.
Schweitzer Fellow Tamar Goldberg is working to prevent that from happening. For her Schweitzer service project, Goldberg partnered with the Vermont Family Network to found COMFORT, a respite program for families in Chittenden County whose children have special health needs. (COMFORT stands for College of Medicine Friends Offer Respite Time.)
“For parents of children with special needs, the physical, emotional, and financial demands are often overwhelming,” says Goldberg, a student at the University of Vermont College of Medicine. “Through providing temporary relief for these parents, respite care can help reduce stress levels and promote the health and well-being of the entire family.”
ASF: Why did you decide to develop your particular project?
TG: After hearing a mother speak to my medical school class about her personal experience raising two daughters with cystic fibrosis, I realized that one of her biggest struggles was to maintain her own emotional and physical health.
All parents need time away from the responsibilities of caring for their children—but because of her daughters’ special needs, this woman had difficulty finding long-term, qualified care providers. As a result, it was difficult for her and her husband to have a night off or spend time with their other children.
Hearing her story inspired me to establish a local respite program, COMFORT, for families of children with special health needs. Working with these families not only provides them with respite, but is a fulfilling opportunity for me and the other volunteers involved. By observing how families cope daily with various clinical conditions, I hope to better serve this population as a physician.
ASF: What do you hope will be the lasting impact of your project on the community it serves?
TG: I hope that COMFORT will be sustained and become an established and accessible resource for local families of children with special medical needs. Involvement of both undergraduate and graduate students allows for a sustained large pool of volunteers so that more families can be involved. Through a partnership with the Vermont Family Network and the UVM Pediatric Student Interest Group, each year a new student leader will be elected to coordinate family and volunteer matches.
I hope to also collaborate with a pediatric palliative care program that has recently been started in Chittenden County. Volunteer respite will continue to be available to families referred to COMFORT through the pediatric palliative care program, social workers, and physicians from the community.
ASF: What do you think is the most pressing health-related issue of our time, and how do you think it should be addressed?
TG: There is a great need to improve health care accessibility, coordination, and delivery. Navigating our health care system can be stressful and complicated, especially for people who receive medical care from many different providers, like families of children with special medical needs. Patients often do not know about all the resources available to them, how to go about accessing those resources, or how to pay for them.
A focus on coordinated patient-centered primary care would both improve the affordability of health care and increase the accessibility, effectiveness, and quality of care. The “medical home” model for delivery of preventative, wellness, acute, and chronic care to our patients is a promising model for transforming our health care system. Through this model, primary care providers, specialists, hospitals, and community service agencies meet and collaborate as an interdisciplinary team—instead of working in isolation—to provide efficient, coordinated care. Building committed relationships and partnerships with patients, to understand their unique needs and support their management of their own care, is an important component.
Families spend a lot of time, energy, and money on organizing care for their children with special health needs. My respite project, like the medical home model, is geared toward coordinating services to meet the individual needs of families, and relieve some of the burden that comes with navigating our complex health care system.
ASF: What has been the most surprising element of your experience as a Schweitzer Fellow so far?
TG: Even though I had researched the statistics, I have still been surprised by the number of families with diverse health conditions in the small community I’m serving [Chittenden County, Vermont, which has a population of about 157,000]. I have had the opportunity to interact with children with more prevalent disorders such as autism and cerebral palsy, as well as children with rare disorders like Angelman syndrome and Pfeiffer syndrome. My experience has been a lesson in the importance of understanding how unique each patient’s medical situation is, and how it affects his or her daily life.
ASF: What does being a Schweitzer Fellow (and ultimately a Schweitzer Fellow for Life) mean to you?
TG: Meeting Fellows with diverse backgrounds, education, and experiences, and learning about their service projects, gives me the personal opportunity to see health care from many different perspectives. As Schweitzer Fellows, we support and inspire each other in the face of project-related obstacles and rigorous academics.
Being a part of Albert Schweitzer’s legacy, along with these other students who share my humanitarian service goals, is a wonderful opportunity. The Schweitzer Fellowship fosters my professional mission as a physician to provide care for underserved communities. As a Fellow for Life, I will promote community involvement and serve as a mentor and role model for other students. My work with underserved populations continues to shape my evolving vision of how patient-centered care contributes to wellbeing.
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