Introduction
We all hope and pray that every
young infant is born healthy and without incident. We hope and pray that every
child grows up to enjoy a life filled with happiness, love, and good health.
However, the reality is that many children are born with, or develop, long-term
or life-long illnesses that require repeated hospitalization and acute care.
This begins a life of doctors, nurses, care givers, tests, treatments,
procedures, and hospital stays. It is a life that many do not consider or give
much thought to if they are not directly affected or know of a family with this
stark reality.
While the health and mental well
being of each and every child is at the forefront of our care and concern, we
must also consider the educational needs of the child. With repeated illness,
hospitalization, care needs, procedures and tests, treatments, and travel time,
students and their families must balance a life of academics with a life in and
out of medical facilities. The question is; how do we, as an educational
community, ensure that these students are provided with sound and supportive
educational opportunities?
My exploration has shown that
little research has been done on the needs, effects, and educational resources
available to students and parents that face this reality. I have discovered
that often times, the responsibility falls on to the local school system that
is ill equipped to deal with these issues and the parents that have more
important issues to attend to. Or, parents take on the role of both care giver
and teacher by home-schooling their child. Both scenarios show that each child
or family must face this problem on their own with the local school system and
that each time they must find their own unique solution. It does not appear
that anyone has looked at a curriculum program that would assist students,
parents, teachers, and school systems with their educational needs while out of
school and receiving care. Nor, is there an online community where these
students can communicate with one another for support and social interaction; a
place where they can talk openly about this issue and how they approach it.
It is my opinion, with the
increased use of technology in education and the advances in online classrooms,
that a program can be put in place to guide, assist, and support both the
student and their family, as well as the teacher and school district with this
issue. My research shows that there are private online systems in place for
health education and emotional support for children with these health needs.
However, I have found nothing of this kind for K-12 curriculum. The goal of
this project is to work with a concentrated group of children’s hospitals: such
as the Texas Medical Center in Houston, TX, where you can work closely with Children’s Memorial Hermann
Hospital, Shriners Hospital for Children-Houston, Texas Children’s Hospital,
and The University of Texas M. D. Anderson Cancer Center. Each of these
hospitals care for children from across the United States and around the world,
who suffer from long-term illnesses that require repeated hospital stays. In
working with the hospital staff, the students, the parents, and the various
teachers and school systems, research can be conducted and the critical
educational needs can be identified; from this, a comprehensive program can be
developed. It can then be piloted within the Texas Medical Centers hospitals,
results can be studied, and a strong national program can be put in place.
Background
I am a teacher; it is who I am and
what I love to do. I have 10 years of experience in the academic field as a
high school teacher, a college instructor, and as a developer and facilitator
of professional development for teachers and student-teachers. In January of
2010, at the age of 37, I was diagnosed with Stage 4 Metastic
Well-Differentiated Appendiceal Adenocarcinoma, a rare form of abdominal cancer
stemming from the appendix. With the rarity of this form of cancer, the local
and regional doctors and medical facilities around my home in Michigan were not
equipped to effectively treat my illness. After careful research, several
consultations, and with the help of my local Oncologist, I chose treatment with
Dr. Mansfield at The University of Texas M.D. Anderson Cancer Center in
Houston, Texas. Over the last 30 months, I have made 7 trips to Houston, had 8
surgeries, and been in the hospital a combined 16+ weeks. This, above my
initial surgery and hospital stay when I was diagnosed, and several trips to
the University of Michigan Cancer Center for acute wound care. Not to mention
the in-home health care that has lasted close to 18 months. For me, my family,
and my friends this new reality was foreign and at times over-whelming. What I
quickly discovered when speaking to other patients and their families is; this
is not so uncommon. In my time at M.D. Anderson, I watched thousands of
patients, just as myself, come and go in the hospital. The most disheartening
was watching the children come, and go, and come back again.
During my battle, I wanted to have something
outside of medicine to focus on. Since I was not able to work, I chose to
pursue my Masters degree in Educational Technology at Michigan State University.
While this was a positive pursuit for me and gave me something to focus on and
strive towards while going through the various procedures, surgeries, and
hospital stays, it also posed several problems. My degree program was online
which eliminated the issue of missing class, but created several technical
issues. Often times, I was not able to get internet service while in the
hospital and there were few alternatives for me to find service. For this
reason, I was disconnected from my courses at times for weeks. There was little
technical structure or support for my academic pursuits while in the hospital.
My professors and advisors were sympathetic, understanding, and supportive.
However, this was not a solution to the problem; how do you continue your
education while receiving treatments during your repeated and extended hospital
stays?
This led me to wonder, how do K-12
students and their parents handle these issues. As I began to ask this question
of my doctors and nurses, they had very few answers. As I began to ask the
young patients and their families that I met during my hospital stays, I heard
frustration and exhaustion in their stories. However, I heard few positive
answers. That is when this idea began to grow in my mind. As an educator, I
want to ensure that every child has the very best opportunity possible at a
quality education. As a student and a cancer patient and survivor, I understand
the frustrations these students and their families go through. I believe that I
am in a strong position to help find a solution to this unique problem.
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