For parents of children with special needs, finding qualified care
providers can be a challengeâmeaning that opportunities to de-stress and
get away (even if itâs just a dinner out) are rare. As a result, stress
levels can skyrocketâand the whole familyâs health and well-being can
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 OFfers Respite Time.)
âFor parents of children with special needs, the physical, emotional,
and financial demands are often overwhelming,â says Goldberg, a student
at the University of Vermont College of Medicine. âThrough providing
temporary relief for these parents, respite care can help reduce stress
levels and promote the health and well-being of the entire family.â
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 childrenâbut because of her daughtersâ 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.Â 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
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.Â 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 âmedical homeâ 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
teamâinstead of working in isolationâto 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.Â 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 Iâm 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 patientâs 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 Schweitzerâs 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.
to learn more about the New Hampshire-Vermont Schweitzer Fellows
Program and our work to develop leaders, create change, and improve
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