Literature Review
Gary J Brumbelow
Introduction
The Topic:
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?
General Overview of
Literature:
In my
search for source material, I found that very little research has been done in
the area of on-line education for chronically ill children. Within this narrow
band of research dealing with on-line education for these children, none that I
have found have dealt with K-12 curriculum. The bulk of the research being
conducted over the last eight to fifteen years has centered on the needs of
students who are integrated into the K-12 public school systems through
inclusionary programs. This demonstrates a strong need for investigation and
research into the effective use of online educational programs for K-12 curriculum
for children suffering from long-term illnesses.
Rational:
My
exploration has shown little research has been done on the potential effectiveness
of technology-based online K-12 educational resources that can be made available
to students and parents. Nor, did my research result in any studies
specifically dealing with online K-12 education for children suffering from a
long-term chronic illness. Therefore, in reviewing the available source
material, I looked for studies that either focused on the effectiveness of
on-line tools for chronically-ill children or studies that focused on the
educational needs of children who suffered from a long-term illness with
repeated hospitalizations and medical care needs.
Body
Kinds of work
reviewed:
My
search for published material in the area of chronically-ill children with
long-term diseases, in regards to their education, produced a limited number of
sources. However, in the pertinent material discovered, I was able to select
strong resources from varying sources. Of the six sources I chose, one is a
published doctoral dissertation, four are published journal articles based on
studies that have some direct correlation to a specific area of my proposed
research, and one is an article reviewing a wide-range of school integration
programs for children with cancer in the United States. Each source provides a
unique perspective of the issues within my proposed research and provides
strong evidence to support my hypothesis. The fact that my research produced a
limited number of resource materials only strengthens my case that further
research is warranted in this area.
Description of
selected important works:
Part of my proposed research is an online interactive
support network where students with long-term illnesses can communicate and
discuss schoolwork, as well as life issues, with their online classmates. It is
my opinion that this network will provide students with an outlet where they
can openly communicate with one another, which will in turn provide a stronger,
more stable learning environment. By having a platform where they can interact
with other students facing the same issues they are, they will feel more at
ease and be more focused on their education rather than the social stigma of
their illness often dealt with in the public school environment. The article Hopkins Teen Central: Assessment of an
Internet Based Support System for Children with Cystic Fibrosis references
research conducted on the benefits of Electronic Support Groups (ESG’s) for
childhood patients with chronic debilitating illnesses. The information
provided through this study shows an increase in communication between the
children in the ESG, and the participants felt that at the end of this study
they had more friends with whom they could relate to. This study is positive
evidence that ESG’s are a viable and worthwhile avenue for students with
chronic life-long illnesses and would provide a benefit when coupled with an
on-line K-12 educational program.
While I feel an online support network for students is
integral to the success of my proposal, the online K-12 educational program is
the main focus of my research. A study entitled Effects of STARBRIGHT World on Knowledge, Social Support, and Coping in
Hospitalized Children with Sickle Cell Disease and Asthma published in
Children’s Health Care in 2002 supports the idea of an online educational
system for chronically ill children. This study reviews the effectiveness of STARBRIGHT World, a
private online computer network for hospitalized children that provides
interactive health education in over 95 hospitals, as well as opportunities to
meet online and socialize with children that are dealing with the same medical
issues. This study reviews children who received health education for either Sickle
Cell Disease (SCD) or Asthma via STARBRIGHT and participated in online
activities while in the hospital and compares the overall effectiveness of that
education to the control group that received the information via traditional
hospital training methods and interactive activities. The findings show that
through the online instructional methods and activities, students demonstrated
a greater depth of knowledge for teens with asthma, and greater support for
students with SCD. These findings provide evidence that online educational and
support programs in general K-12 education would benefit students overall
educational progress, while providing a stronger and more supportive learning
environment for children with long-term diseases.
My research has found that the primary option for
students and parents today is integration into the public school systems during
and after treatment. In order to understand the issues that students are
facing, and evaluate the merit of my proposal, I looked for research conducted
on the positive effects and negative issues faced by chronically ill children
who are educated through inclusion in the public school systems. Project School Care: Integrating Children
Assisted by Medical Technology into Educational Settings is
a comprehensive study looking at the needs of children assisted by medical
technology as they re-enter the public school setting. This research looks into
the planning required by medical staff, the parents and child, and the school
system leading up to the student’s enrollment into the classroom. The study was
conducted with participation by doctors and nurses involved in the ongoing care
of the student, the parents and the child involved, and the members of the
participating school district (teachers, building principals, counselors, and
district administrators). The findings showed, that while there was great
detail, time, and resources dedicated to providing the student with a positive
and safe transition back into the public school system over the period of the
study, there was still a great deal that needed to be done in order to ensure
that this was a positive solution to the child’s educational needs. This study
provides a strong look at the issues facing chronically ill children as they
continue their education in a public school setting and provides support for
research on alternative online school platforms.
A key factor in the educational success of children
suffering from long-term illnesses is the student themselves. Supporting Pupils in Mainstream School with
an Illness of Disability: Young People’s Views is study that looks at the
educational issues and needs of students with long-term chronic illnesses. Not
from the point of view of the parent, the medical staff, or the school, but
rather from the students themselves. Through carefully constructed interviews,
researchers questioned students on the issues, needs, and successes of
inclusion in the public school system. The students stated that they were able
to manage their education; however, there was need of assistance from outside
sources (parents, teachers, medical staff, counselors, etc.). Further
investigation showed that in fact, students suffered in dealing with repeated
absences, issues with falling behind in school work, social exclusion with
peers, exclusion from curriculum, difficulty with teachers who did not
understand the needs of the students, and exclusion from school social
functions and student groups. This gives evidence to the need for research and
consideration in alternative instructional styles such as virtual or on-line
classrooms and ESG’s where the students can fully participate in their classes
and interact socially, while in and out of the hospital.
In order to support my theories and provide evidence
towards the need for a pilot online K-12 program, I will cite data collected
and published in Educational Late
Effects in Long-Term Survivors of Acute Leukemia in Childhood. This dissertation studies
the effects of childhood cancer patients. Within this study, there is factual
research and discussion on the overall educational effects on the students both
personally and academically while in treatment. This study not only reports on
the academic growth and performance on standardized tests, it also looks at
areas such as absence from school, social acceptance in the classroom while the
student has lingering physical symptoms stemming from treatment, family issues,
and mental well-being. All of this information is directly pertinent to my
research topic. The information contained supports my thoughts and questions
surrounding the issues of educational stability and quality for children while
receiving treatments and undergoing repeated hospitalizations for long-term
diseases.
The
final article I chose entitled, A
Review of School Reintegration Programs for Children with Cancer,
is a review of various school integration programs throughout the US for
children with cancer. In this review, federal regulations regarding the rights
of students with chronic illnesses to educational and support services are
discussed. Along with this, the importance of school attendance, the
difficulties surrounding the return to school, as well as components for
reintegration programs are presented and thoroughly discussed. This article
gives a broad view of programs provided for cancer patients who are of school
age. This also provides information pertinent to the investigation of the
potential need and success of a nationalized health program for chronically ill
children.
Conclusion
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. I believe the studies and articles cited demonstrate a valid
need for investigation into the potential positive effects that online
education can have on the lives of children who suffer from long-term illnesses
that require repeated hospital stays and acute care.
Cited Sources
Hazzard, A. Celano, M., Collins, M. (2002). Effects of STARBRIGHT World on Knowledge, Social Support, and Coping in Hospitalized Children with
Sickle Cell Disease and Asthma. Children’s
Health Care, 31(1) 69-86.
Johnson, K. B., Ravert, R. D., Everton,
A. (2001). Hopkins Teen Central:
Assessment of
an Internet-Based Support System for Children With Cystic Fibrosis. PEDIATRICS, 107(2).
Lightfoot, J., Wright, S., Sloper, P. (1999). Supporting Pupils in Mainstream
School with an
Illness of Disability: Young People’s Views. Child: Care, Health, and Development, 25(4), 267-283.
Palfrey, J. S., Haynie, M, et al. (1992).
Project School Care: Integrating Children Assisted by Medical Technology into Educational Settings. The Journal of School Health, 62(2), 50.-54.
Peckham, V. C. (1986) Educational
Late Effects in Long-Term Survivors of Acute Leukemia in Childhood. (Doctoral
Dissertation).
Prevatt, S. F., Heffer, R. W., Lowe, P.
A. (2000). A Review of School
Reintegration Programs for Children with Cancer. Journal
of School Psychology, 38(5), 447-467.
