Running Head: CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL
Creating a successful school re-entry program at Duke Hospital School
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 2
Abstract
For children with chronic medical conditions, the transition period between hospitalization and
treatment and recovery when the child returns to their previous environments can be incredibly
challenging. Children who are navigating the transition process are in need of physical,
emotional, mental and social support as the implications of their condition and treatment
manifest themselves in every aspect of the child’s life. Existing hospital school programs and
team member-identified needs are examined in this paper to evaluate effective and successful
characteristics of transition programs as well as to identify necessary elements of successful
programs that participants feel are either missing or are not consistently practiced. This paper
also recommends practices for Duke Hospital School to improve their existing transition
program based on evidence-based literature and child, parent and hospital school staff
interviews.
Keywords: chronic medical conditions, children, school, hospital school
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 3
Creating a Successful School Re-Entry Program at Duke Hospital School
Introduction
For children with chronic illnesses, survival rates have increased from a five-year
survival estimate of 59% in 1975 to 80% in 2002 (Elam & Irwin, 2011). Almost one in five
children in the United States have a chronic disease, and 6.5% suffer from an illness severe
enough to interfere with normal school activities, with a quarter of those children consequently
unable to attend school regularly (McCabe & Shaw, 2007). This leap in medical success has
created a population of students who have not yet been significantly large enough for whom a
uniform transition protocol could be created. Many of the hospital-to-school transition programs
in place violate best practices, most notably Public Law, Section 504 of the Rehabilitation Act of
1973 guaranteeing a Free and Appropriate Education and highly qualified teacher requirements
(Elam & Irwin, 2011). Transition programs have yet to evolve to the new system of treatment
that attempts to limit hospital stays by making as many treatments as possible outpatient, which
consequently means a child who is chronically ill is constantly transitioning between hospital
care and homebound care (McCabe & Shaw, 2007). This regular movement of the child requires
education to be provided both inside and outside of the hospital while the child is away from
school and requires frequent and effective communication between the child’s two environments.
The more a patient can stay enrolled in a school program, whether inside or outside of the
hospital, the smoother the transition will transpire after their treatment (Hardy, 2013). In 2008,
the Americans with Disabilities Act was adjusted to eliminate discrimination on the basis of
disability by clarifying and expanding the term “disability” in order to widen the Act’s coverage,
yet there are still continued challenges for the hospital-to-school transition for children with
chronic illnesses. As of 2010, 45% of children with chronic illnesses report falling behind in
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 4
their schoolwork. This paper reviews, examines and summarizes existing programs within the
context of the needs of children with chronic illnesses to support the development of a transition
program for Duke Hospital School that can successfully transition patients from hospital to
school. Case studies from Duke Hospital School and Cincinnati Children’s Hospital will
represent the views and opinions of bedside teachers, parents, patients and school interventionists
to hear from them how their hospital-to-school transition program has been successful and in
what ways the program they participated in could be improved. As this paper evaluates specific
cases, everyday challenges that literature may overlook will be exposed and real life examples of
challenges the literature explains will be supported as relevant. Most of the literature available on
hospital-to-school transition programs describes challenges and methods, but few case studies
are evaluated in comparison to the literature. When patients and families are included in studies,
the number of participants is limited. This paper will fill in some of the gaps that today’s
literature has created, interviewing relevant stakeholders, including an emphasis on what patients
and families say about their experience transitioning from hospital to school. Stakeholders
include all parties involved in the transition process and encompass, but are not limited to,
children, parents, doctors, nurses, mental health professionals, Child Life Specialists,
schoolteachers, hospital schoolteachers and school interventionists. These stakeholders will be
addressed as “team members,” encouraging these individuals to act as a team in support of the
child who is chronically ill. As children are surviving chronic illnesses more than ever before,
educators and hospital professionals have a responsibility to examine the strengths and
weaknesses of existing hospital-to-school transition practices. This paper will summarize team
members’ experiences to suggest best practices for a successful hospital-to-school transition
program.
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 5
Research Review
Lack of School-Established Protocols for Children with Chronic Illnesses
Public and private schools are prepared for pre-determined protocols established by the
state or specific school for educating children with special rights or students who misbehave.
“Special rights” refers to children who have behavioral, physical or cognitive disabilities that
require a specialized education. No universal protocol is in place for schools to follow for
children who are diagnosed and treated for a chronic medical condition. Unlike previous
decades, children are surviving diseases that were once considered fatal, opening a new realm of
challenges in educating this previously small population (Elam & Irwin, 2011). The Individuals
with Disabilities Act of 2007 attempts to include children with chronic illnesses, however this
Act and No Child Left Behind fail to define practices to address the specific needs of chronically
ill children and to include children with multiple chronic illnesses (Elam & Irwin, 2011). Most
transition programs that are in place assume that transition programs do not need to be
established until after the child’s treatment, when in fact, successful programs are planned as
soon as a child is diagnosed (Bryner et al., 2012; McCabe & Shaw, 2007).
When a child is diagnosed with a chronic illness, schools would benefit from a universal
protocol of steps to follow to prepare to educate the child throughout their treatment and
recovery, as opposed to schools having no preparation for such an event until immediately before
the child’s return to school. Hardy (2013) notes that educational interventions for a child who is
chronically ill are inconsistently applied and are rarely based on empirical research. When a
child who is chronically ill returns to school without having participated in a successful hospital-
to-school transition program, they may be unprepared for the challenge and quantity of
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 6
schoolwork, for the school environment, may be overwhelmed by peer interactions and may not
be ready to participate in school as they did before their chronic illness.
Lack of Teacher Knowledge About Diseases and Effects
Current research reveals teachers’ lack of knowledge about chronic illnesses and
potential side effects of treatment that children may experience. Christina Marchitto’s graduate
thesis on the “Transitioning Needs of Children with Chronic Illness” surveyed school and
hospital professionals, and found that school teachers expressed a desire to learn more about a
child’s chronic illness so they could be prepared to work with the child once they return to
school (Marchitto, 2010). Marchitto interviewed fourteen school personnel and ten hospital
specialists throughout New England, representing a wide geographic area but failed to survey
patients and their families. Marchitto’s findings supported Elam & Irwin’s conclusions from
their 2011 presentation that suggests if a teacher is unfamiliar with the child’s illness and
associated challenges, they are not prepared to adequately educate the child upon their return.
Teachers could greatly benefit from training and learning about the chronic illness, provided by
both the school and hospital, to learn about the disease, effects of treatment and implications on
education. A teacher who is trained in working with a child with a chronic medical condition
would be more consistent, involved and understanding of the child’s transition process (Elam &
Irwin, 2013). A 2008 Australian study that observed and interviewed students, parents, school
professionals and hospital personnel found that a child who is chronically ill will feel comforted
and well-cared for by a teacher who has a comprehensive understanding of the child’s illness
(Campbell & St. Leger). One limitation of Campbell & St. Leger’s study is that only four of
eighteen families agreed to be interviewed, possibly altering the conclusions extrapolated from
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 7
interviews. Additionally, Campbell & St. Leger’s study was completed at one hospital in
Australia, which may not accurately represent how most transition programs operate.
Training and informing teachers of the illness and the illness’ implications will improve
the child’s educational experience, the effectiveness of teaching and will include the teacher in
the transition program more so than if they were not trained. Training does not necessarily have
to be extensive or expensive to be effective. Presenting a teacher with information on the illness
and an opportunity to speak with health professionals who work with the child would allow a
teacher to voice their concerns, learn about the illness and learn about the influence the illness
and treatment may have on the specific child.
Uniqueness of Children with Chronic Illnesses
Children with chronic medical conditions represent a new population in the educational
realm. Placements into classrooms with children who have special rights or disciplinary
challenges do not provide the educational experience necessary for a child who is ill to stay on
track in school and succeed despite their medical experience. These children with chronic
illnesses require a new program to be established for this unique population (Elam & Irwin,
2011). The type of illness the child is diagnosed with, their specific treatments, the duration of
hospitalization and severity of symptoms all need to be considered when preparing an
educational program for a student who is chronically ill (Elam & Irwin, 2011). Children who
undergo treatment for brain tumors, for instance, are likely to experience cognitive delays and
adjustments, while children who are diagnosed and treated for other chronic conditions may not
experience the same cognitive effects (McCabe & Shaw, 2007). Every disease has varying
effects and treatment plans, consequently disallowing all children who are chronically ill to
receive the exact same transition program and practices (McCabe & Shaw, 2007). For example,
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 8
on average, a child who has a chronic medical condition is absent sixteen days versus an average
three days a year for a healthy child, while leukemia specifically prevents a child from attending
school approximately forty days of the year (McCabe & Shaw, 2007).
Campbell and St. Leger’s “Back on Track” program developed a Personal Needs Plan
(PNP) for each child who is chronically ill in Victoria, Australia at the Royal Children’s Hospital
Education Institute (2008). While Back on Track has a system of steps to follow for each child,
there is individuality in each step. The child, their family, their schoolteachers and hospital staff
develop each PNP, acknowledging their specific illness, treatment and education history. Team
members participating in Back on Track appreciated the flexibility of the program and the
increased individuality helped the students transfer back to school more successfully than their
supporters believed they would have without the PNP, according to interviews completed by
team members (Campbell & St. Leger, 2008). A limitation of Campbell and St. Leger’s study is
that no other piece of literature evaluated the Back on Track program. Back on Track’s
successful characteristics were reported to individuals who executed the Back on Track program,
possibly influencing the participant’s responses.
An effective and personalized transition program must, according to the literature,
include all team members working with the child and must take into account specific challenges
and consequences of the child’s illness. In Hamlet, Gerger and Schaefer’s discussion of a school
counselor’s role in the life of a child who is chronically ill, counselors concluded that all of the
systems in the child’s world must be considered in the transition program (2011). This study
received feedback from ninety-six school counselors over an email survey about their
experiences working with children who are chronically ill. Participants work in both public and
private elementary, middle and high schools and have varying years of experience, representing
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 9
a wide variety of school counselors (Hamlet, Gerger & Schaefer, 2011). One limitation of
Hamlet, Gerger and Schaefer’s study is that most of the children counselors had worked with
were never hospitalized for more than one day at a time because of their chronic medical
condition. However, even those children who were not regularly hospitalized still reported
benefiting from a comprehensive transition program. The National Association of School Nurses
supports Hamlet, Gerger and Schaefer’s findings in their 2012 report on transition planning for
children who are chronically ill as they write, “transition plans must be individualized” to be
successful (Bryner et al., 2012). Every chronic medical condition is unique and is essential to
consider in forming either an official, school-based Individualized Education Plan or unofficial
plan for team members to follow as a student transitions from hospital to school.
Academic, Social and Emotional Support throughout Transition
According to recent literature, three realms must be supported throughout the hospital-to-
school transition. In Clemens’ fourteen interviews with mental health professionals helping
young psychiatric patients transition from hospital to school, interviewees reported that students
need academic, social and emotional support (Clemens, 2010). Academic support includes
communication with the child’s schoolteachers during hospitalization and support from hospital
staff as a child transitions back to their original school setting (McCabe & Shaw, 2007). A 2011
case study of a children’s hospital in Australia found that children with chronic medical
conditions are also in need of social support during hospitalization. Green, Nisselle and
Scrimshaw’s study only observed one hospital school teacher and the patients she worked with
for one day, limiting their findings to one very specific case study. Their research concludes that
social support comes from a child’s need for a sense of normalcy during their hospitalization
based on observations in a pediatric oncology unit (Green, Nisselle & Scrimshaw, 2011).
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 10
Children who are chronically ill report that social support during hospitalization and the
transition period is highly valued, and helps prevent a feeling of isolation from the child’s friends
and community (McCabe & Shaw, 2007). Emotionally, the child who is chronically ill needs
support to process the intensity of their illness, feelings of isolation, little peer interaction and
feelings of becoming a burden to their caregivers (Campbell & St. Leger, 2008 and Elam &
Irwin, 2011). Effects of chronic illnesses include depression, isolation, helplessness, inferiority
and inadequacy (Elam & Irwin, 2013). Children who are chronically ill require consistent
support from their caregivers throughout hospitalization, treatment and the transition process
back to school. Literature suggests that academic, social and emotional support is beneficial for
children with any chronic medical condition, not just those with psychiatric illnesses, extending
these three realms of support to all children with chronic medical conditions (McCabe & Shaw,
2007). When creating a transition program, academic, social and emotional needs of the child
who is chronically ill need to be identified, addressed and supported through a transition plan.
Communication and Collaboration between Hospital and School
Recent literature concludes that the most influential determinant of a successful hospital-
to-school transition program is frequent and effective communication and collaboration between
a child’s hospital and school. No one individual is responsible for maintaining the academic
pulse of a student who has a chronic medical condition; all team members are responsible for
preparing a child who is chronically ill to succeed in school (Elam & Irwin, 2013). Savina and
Simon wrote in their 2010 paper on transitioning children from psychiatric hospitals to schools
that communication between hospital and school professionals should address school staff’s
knowledge of the chronic illness to improves a child’s chance of having a successful transition
back to school (2010). Team members should all work together with the child to form a
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 11
comprehensive transition program that allows frequent communication, that may take the form
of phone calls, emails, video conferencing or in-person meetings. A child who is chronically ill
requires a strong relationship between their school and hospital to encourage a smooth transition
in which the school is aware of the child’s progresses or fallbacks that present themselves
throughout hospitalization, treatment and recovery (McCabe & Shaw, 2007). In Victoria,
Australia, the Back on Track program encouraged communication through internet-based virtual
classroom, student portal websites, video conferencing, email, instant messaging and home and
school visits (Campbell & St. Leger, 2008). Participants in the Back on Track program also met
with program staff after they returned to school to evaluate the success of the transition,
remaining challenges, and to form a plan for continued support for the child. The program was
not withdrawn until the student returned to school and appeared to have suitable educational,
physical and socio-emotional support strategies in place at the school based on teacher and
parent interviews. The more the hospital staff and schoolteachers communicated and shared
materials through video conferencing, emails and school visits, the smoother the transition
transpired for the child who was chronically ill (Campbell & St. Leger, 2008). Although some
communication issues arose, such as lack of Information Technology support and lack of
familiarity with programs used, Back on Track demonstrated that frequent and effective
communication in schools improves a child’s chances of a smooth hospital-to-school transition.
Hamlet, Gerger and Schaefer’s 2011 paper on the role of a school counselor in a
chronically ill child’s life concludes that communication between all constituents is essential,
with more success the more team members meaningfully communicate (2011). The National
Association of Nurses and Marchitto’s graduate thesis support these findings as well, noting that
as of now there is a lack of communication between hospitals and schools regarding children
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 12
with chronic illnesses, but that frequent phone calls and virtual or in-person meetings are critical
to raise awareness of the child’s needs (Bryner et al., 2010). Out of ten hospital staff Marchitto
interviewed and surveyed, five said there was no contact person with whom they could
communicate with the school system directly and only two out of the ten had contact with the
child after they returned to school (Marchitto, 2010). Marchitto interviewed hospital staff
throughout New England, indicating that lack of regular phone calls, in-person meetings, emails
and video conferences between hospital and school is not specific to one hospital, but occurs
regularly across many children’s hospitals. According to literature, all team members must be
committed to frequent communication in order for the child who is chronically ill to have a
smooth hospital-to-school transition.
Common Elements of a Successful Transition Program from the Literature Review
The literature revealed common elements that contributed to successful hospital-to-
school transition programs. The first element is educating schoolteachers about specific chronic
medical conditions and influences of the treatments a child may receive. Every chronic medical
condition has unique manifestations and every child experiences their illness differently.
Consequently, programs that considered each child’s unique experience resulted in more
successful transitions. Second, the literature revealed that a program’s likeliness to succeed
decreases immensely if the transition program being researched was put in place only once a
child returned to school, as opposed to as soon as they were diagnosed. Multiple studies also
concluded that effective transition programs included emotional, social and academic support
(see Clemens, 2010; Green, Nisselle & Scrimshaw; 2011 and McCabe & Shaw, 2007 for a
review). “Falling behind leads to catching up, and catching up takes time away from keeping up”
(Thies, 1995). Falling behind in one domain could result in delays in the other domains, so
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successful transition programs addressed the child’s comprehensive needs. Finally,
communication was absolutely required for a successful hospital-to-school transition program in
the research. Communication, which may take the form of emails or video conferencing, such as
the Back on Track Program practiced, or site visits, in-person meetings or group forums, was
increasingly effective as more team members were involved. According to the literature,
communication between all parties, training of teachers and well-established protocols for
creating an individualized program respecting children’s’ academic, social and emotional
diversity contributed to a transition program’s success.
Methods
In an attempt to determine what characteristics are necessary for a successful hospital-to-
school transition program, this project examines the experiences of multiple team members
involved in a hospital-to-school transition. These team members include children, parents,
hospital schoolteachers and school interventionists. Home schoolteachers, the child’s previous
schoolteacher(s), psychologists, social workers, doctors and nurses are among other relevant
team members that have an important perspective but were not interviewed for this project.
Children, parents, hospital schoolteachers and school interventionists were interviewed based on
a list of questions specific to each team member. Interviews were done over the phone and in
person and lasted from one-half hour to two hours per interview. Little research is available that
compares hospital school transition programs and the views and opinions of a multitude of team
members. This research project attempts to fill in the gap recent literature has created by
comparing common themes from the literature, interviews and a site visit to compile
recommendations to Duke Hospital School for creating a successful hospital-to-school transition
program.
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Nine team members were interviewed as part of this research study. Six of the team
members are associated with Duke Hospital School and the remaining three team members are
associated with Cincinnati Children’s Hospital. Two patients, two parents, four hospital
schoolteachers and one school interventionist participated in interviews in the month of October
2013. Two of the interviews done with Cincinnati Children’s Hospital-associated team members
were completed in person during a site visit to the Children’s Hospital. Three of the interviews
were recorded with the participant’s consent and notes were taken during the interviews of the
remaining team members.
Organization of Duke and Cincinnati Children’s Hospital Schools
An important consideration in examining the data collected from team members at both
Duke Hospital and Cincinnati Children’s Hospital is the difference in organizational structures.
Duke Hospital School has nine hospital schoolteachers and four homebound teachers and
operates as part of Durham County Public Schools (“Duke Hospital School”). Cincinnati
Children’s Hospital has six hospital schoolteachers as part of the Cancer and Blood Diseases
Institute, three full-time and one part-time hospital school teacher as part of the Child Life
program, seven hospital school teachers as part of the Psychiatry department and nine members
of the school intervention team (“Cancer and Blood”). Of the six hospital schoolteachers who are
part of the Cancer and Blood Diseases Institute, three are from Cincinnati Public Schools and
three were hired by Cincinnati Children’s Hospital. Duke Hospital schoolteachers collectively
work with all children in the hospital who have either acute or chronic conditions. Cincinnati
Children’s hospital schoolteachers are in divisions according to the type of patient. The teachers
who are part of the Cancer and Blood Diseases Institute work with children who are chronically
ill, the psychiatric department’s teachers work with children in the psychiatric wing and the
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 15
Child Life department works with children who either have cystic fibrosis or who have an acute
condition. The School Intervention Program at Cincinnati Children’s Hospital communicates
with the teachers from the Cancer and Blood Diseases Institute, arranging transition away from
the hospital as soon as the child with a chronic medical condition is done receiving treatment and
has recovered, which is when the hospital schoolteachers end their work with the children.
Duke’s hospital schoolteachers work with children during and after treatment, ensuring
continuity and familiarity with a child and their family.
Findings
From the interviews, multiple characteristics presented themselves in each case of a
successful hospital-to-school transition program. As research suggested, a key element of an
effective transition program requires communication between team members. Multiple hospital
schoolteachers discussed the importance of communication between hospital schoolteachers and
the teachers from the child’s previous school. Communication included emails and phone calls
between hospital schoolteachers and the child’s previous school, copying schoolteachers,
doctors, nurses and mental health professionals on emails and school visits during the transition
process. The more frequent the communication, the more prepared a child was to re-enter their
school after hospitalization. The School Intervention Program at Cincinnati Children’s Hospital,
for example, collaborates with the child’s family, teachers and peers before the child re-enters
school. Along with social workers, psychologists, doctors and nurses, the School Intervention
Program forms a comprehensive plan and report on the child’s development, challenges and
implications from treatment that will manifest themselves in school. A unique element of the
School Intervention Program’s tasks is to complete what is called a “peer-in service,” which is
when the intervention team communicates with the peers of the child, either in school or in a
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social group that the child is part of, to prepare the child’s friends for the influences the child’s
chronic medical condition may have on their life. The team answers these children's questions, as
well as questions of the faculty of the school to prepare the child’s home environment for their
return from hospitalization and treatment. One parent who participated in an interview discussed
the most overwhelming challenge of the hospital-to-school transition: the emotional aspect of the
child’s transition. The child is supported thoroughly throughout treatment, but often when the
child returns to their home and school setting, they are isolated from their peers after
experiencing such a meaningful life event. One child reported “severe periods of isolation and
depression,” as a result of hospitalization and illness and lack of emotional support during the
transition process. Cincinnati Children’s Hospital’s implementation of a system that works
closely with the adults and children in the patient’s life is one way to help address the emotional
needs of children with chronic medical conditions as they return from hospitalization.
One hospital schoolteacher experienced a unique situation when a family the teacher
knew personally had a child who was diagnosed with a chronic medical condition. The parents,
family and child had a close relationship before, during and after the child’s treatment and illness
and this hospital schoolteacher strongly believed that the close relationship between team
members that led to frequent and effective communication, in the form of phone calls, emails,
and in-person meetings, was an essential element that contributed to the success of this child’s
transition back to school. The child “easily” transitioned back into school after treatment and
recovery. Frequent communication meant that the child’s schoolteacher was aware of the child’s
progress and could create a fitting environment that was prepared to receive the child back after
hospitalization.
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A second parent interviewed discussed the close relationship that their child had with the
child’s hospital schoolteacher. The close relationship resulted in a more challenging course load
during hospitalization and a support system for the child once they left the hospital school. The
child reported that when they returned to school, they were prepared and on track because of the
work they completed while in the hospital school. The child stayed in touch with their hospital
schoolteacher after hospitalization and consulted the teacher for academic and emotional support.
Both the child and the child’s parent reported that this supportive relationship was the most
successful characteristic of the child’s transition program. To contrast this child’s experience,
another child participant felt strongly that their caregivers within the hospital saw the child only
as a “body, not a person.” As a result, this child felt that they were not respected which led to an
“isolating” transition process. In these two cases, communication vastly improved a child’s
transition experience and a lack of communication isolated another patient.
Communication between team members was shown to manifest itself in a variety of
ways. Both Duke Hospital School and Cincinnati Children’s Hospital travel to schools within a
two to three hours driving distance before the child returns to school, and when the school is too
far away to drive to, hospital schools communicate over the phone or video conference. At both
hospital schools, a teacher will ideally travel to the child’s school with a social worker and nurse
to discuss with faculty the implications of the child’s treatment and often to develop an
Individualized Education Program (IEP) based on the child’s academic, social and emotional
needs. This practice varies at both Duke and Cincinnati, as not all schools are receptive to
hospital school programs’ help and because traveling to a school with team members requires a
substantial time and financial commitment. Cincinnati Children’s Hospital addresses this strain
on time by dividing their hospital school program into two divisions: bedside teachers and a
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school intervention team. The bedside teachers work within the hospital and once a child is
released from the hospital and has finished treatment, the school intervention program organizes
communication with the school and takes care of logistical concerns, such as immunization
exemption or special transportation requirements.
Both Cincinnati and Duke Children’s Hospitals address the need to support a child after
they have survived their illness, which is essential to a successful transition program. A strength
to Duke Hospital School’s approach to combine bedside and school intervention responsibilities
is the continuity a child and family will have as their hospital schoolteacher collaborates with
team members during treatment and during a transition. A concern with this organization of
responsibilities is the strain on time a hospital schoolteacher may experience, balancing bedside
teaching and school intervention. Cincinnati Children’s Hospital divides these responsibilities
into two divisions, addressing the time strain, but possibly resulting in somewhat fragmented
care that cannot guarantee such continuity.
The literature revealed that successful hospital-to-school transition programs incorporated
frequent and meaningful cooperation and support between the child’s school, the hospital school
and the child and their family. Common challenges of existing transition programs were a lack of
standardization among programs and a lack of communication between team members. There is
no standard organization for hospital school programs, which results in unique rules and
standards from hospital to hospital. This differentiation means that as one hospital school
identifies and confronts an issue, they cannot share exact solutions with other schools, as the
other schools have different structures. Hospital schools that are partnered with a public school
system, like Duke Hospital School for example, differ greatly in structure from hospital schools
that are independently organized by a hospital department, like portions of Cincinnati Children’s
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Hospital School. Public school-partnered hospital schools and hospital department-organized
hospital schools are held to varying standards, rules and expectations that impact the
performance and requirements of teachers and staff members. Common elements can be shared
between hospital schools, but because of a difference of structure, four hospital school teachers
interviewed acknowledged that they feel like every hospital school is “on their own” to solve the
problems each school faces. Additionally, there is no common standardization of qualifications
of hospital schoolteachers, which can directly impact the effectiveness and quality of the
hospital-to-school transition program.
Another challenge multiple team members presented was a lack of communication
between hospital schools and the child’s previous school and between hospital professionals.
While some of the interviews revealed instances of effective communication, seven interviewees
mentioned a lack of communication and the negative impact a lack of communication has on
transition programs. Multiple hospital schoolteachers felt that the farther away a school was from
their hospital, the more difficulty the teachers had communicating with the child’s previous
school. Every hospital schoolteacher interviewed agreed that communication was more effective
when it was done in person than when it was done over the phone. The smaller the distance
between the hospital and the child’s school, the more frequent and the more effective
communication between school faculty members and the hospitals. To strengthen the
relationship between hospital schools and schools that are far apart, more frequently scheduled
phone calls and email updates may help.
A second realm that influences the communication between relevant team members is the
communication between teams at the hospital. During hospitalization, hospital schoolteachers,
Child Life Specialists, doctors, nurses, social workers and psychologists, among many more
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 20
supporters, work with a child. The more communication between those supporters, the more
effective a developed treatment is. One hospital schoolteacher interviewed practices copying
team members on all emails relating to the child so that the entire support team around the child
is informed about the child’s progress and development on a daily basis, rather than only when
there is a specific issue. A hospital software system allows all professionals within the hospital
who are working with a specific child to see the notes and charts related to the child. This
software allows the hospital schoolteachers to see the notes a psychologist or doctor makes, and
vice versa, including every supporter in the child’s hospitalization progress.
Finally, the most commonly presented challenge team members discussed was a lack of
emotional support for the child during their transition from hospital to school. All of the parents
and children interviewed mentioned the emotional challenges the child experiences after their
treatment ends. The child is well supported throughout hospitalization, but as one interviewee
described, for a child who has recovered from a life-threatening illness, the illness “is never
over.” The child may no longer be diagnosed with an illness, but there are almost always
physical, emotional and social implications on the child’s development. As one parent said, the
child “needs an advocate in every sense.” The children whom hospital schoolteachers described
as having the most successful transitions had close relationships with a supporter from the
hospital to speak with and consult during their transition back to school. From interviews,
literature review and a site visit, communication and support for children during the transition
progress is essential to the academic success and emotional and social development of the child.
Limitations
As discussed previously, the hospital-to-school transition process is a relatively new
realm of research. Consequently, little literature is available researching hospital schools across
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 21
the country. There is a wealth of literature on specific programs and specific aspects of certain
programs, but there is a need for research that takes into account many hospital school programs.
This project attempts to examine multiple hospital school programs from the perspective of four
types of team members over nine interviews. There are many relevant actors influencing the
hospital-to-school transition, and this study only reached four (children, parents, hospital
schoolteachers and school interventionists). Additionally, greater numbers of participants would
be beneficial in understanding common concerns and successful characteristics related to
transition programs. Participants were associated with only two hospitals, which limits the
exposure of participants to a variety of hospital school programs. Also, children interviewed
were mostly treated in a hematology and oncology environment, which does not cover all of the
conditions a child may have that is considered a chronic illness. Further research would need to
reach children who have a wider range of chronic medical conditions. Finally, all of the data
collected for this research was qualitative, with no quantitative component. Surveys or
questionnaires could reach a wider range of team members as well as a larger amount to evaluate
the commonality of themes that emerge from research and literature reviews.
Recommendations
Based on the literature review, interviews completed as part of this research study and a
site visit to Cincinnati Children’s Hospital, common elements have emerged that are essential for
a successful hospital-to-school transition program at Duke Hospital School. These elements
include frequent and effective communication and collaboration between a variety of team
members, continued social and emotional support after the child has completed treatment and
standardization of hospital and school protocols relating to the child’s school re-entry.
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 22
Communication between team members contributes to a child’s successful experience
both during and after hospitalization and transition. Communication between teams of supporters
at the hospital is important as well so that each intervention and activity keeps in mind the
specific challenges, needs and background of each child. Communication between team
members may include emails, phone calls, sharing the child’s charts, visiting the child’s home
and school, videoconferencing and in-person meetings between team members. This frequent
communication may be organized with a set of protocols for schools to follow. A complete
understanding of the child’s progress will prepare schools to welcome back the child into an
environment that is prepared to teach them with the child’s chronic illness experience in mind.
Another essential part of communication between team members includes teacher
education. If a health professional or educator who is knowledgeable about a specific medical
condition spent a couple of hours working with and informing a teacher about a child’s chronic
illness, the teacher would be much more successful working with the child in their classroom
than without training. Simple training such as this requires little time and money but has the
potential to change the educational experience of a child. Teachers have reported feeling
unprepared to receive a child who has just recovered from a life-threatening illness and research
supports the idea that the more educated a child’s school system is about their condition,
treatment and implications, the more successfully the child can transition back to school.
An additional key element of a successful transition program is the incorporation of
emotional support during the transition process. Every child and parent interviewed revealed a
pressing need for emotional support that was not available during the transition program.
Children experience great stress, isolation and sometimes guilt after surviving a life-threatening
disease. Often times, the emotional support a child receives during their treatment is no longer
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 23
present once they leave the hospital. Emotional support frequently came from a hospital staff
member whom the child had a close relationship with. As one parent suggested, every child
could benefit from an “advocate” who can support the child throughout their transition to
evaluate emotional, social and academic needs. Literature and interviews reveal a need for
emotional support, and a cost-effective program to address this need would be to assign a team
member who develops a close relationship with the family during treatment to continue their
involvement during the transition process. Cincinnati Children’s Hospital addresses this need
through the School Intervention Program, which completes school visits and “peer-in service.”
Interviews with hospital school staff from Cincinnati revealed mostly positive transition
experiences and interviews with Duke Hospital School staff revealed positive and negative
transition experiences, which may indicate a strong advantage to the “peer-in services” and
school visits the School Intervention Program executes. This conclusion should be considered in
relation to the limited number of interviews and lack of quantitative support, but as literature and
interviews reveal, emotional support during transition greatly benefits the child.
A possible and feasible suggestion for Duke Hospital School to create a more successful
hospital-to-school transition program is to reorganize the division of labor amongst staff
members. Hospital schoolteachers are often stressed trying to incorporate bedside teaching and
school re-entry, finding little free time in the day to travel to schools in lieu of working bedside
with children. If hospital schoolteachers either worked beside or worked directly with the re-
entry side of the transition program, every teacher would have more time for their assigned
responsibilities. Teachers who were assigned bedside teachers would have more time in their day
to work with the children in the hospital while teachers who focused on re-entry could spend
their working with schools and faculty to prepare the child’s school environment for re-entry
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 24
without taking away time from working with patients. Instead of restructuring Duke Hospital
School all at once, the program may consider assigning one hospital school staff member to the
re-entry/transition side of the hospital schoolteacher’s responsibility to evaluate the effectiveness
and feasibility of a possible restructuring.
A second suggestion for Duke Hospital School would be to encourage the existing close
relationships that hospital schoolteachers form. Children and families who had a close
relationship with a hospital school staff member reported in interviews “smooth and easy”
transitions back to school. Hospital schoolteachers could create a universal timeline of follow-up
phone calls or interviews to contact patients and their families after they have left the hospital
school in order to assess their emotional and social needs and to suggest resources to help the
child’s emotional health. A key concern in implementing any new characteristic to a hospital
school program is time. Hospital schoolteachers are already challenged to fit all of their
responsibilities into their workday, so including post-treatment interviews would be an additional
time constraint for some hospital schoolteachers. Realistic recommendations take into account
financial resources, but time is as important of a resource as money and is appreciated as a cost
of its own. A possible solution for Duke Hospital School would be to allot a certain amount of
time during the week for hospital schoolteachers to reach out to the families they are an
“advocate” for. Incorporating this practice into the hospital schoolteacher’s weekly schedule
would encourage schoolteachers to reach out to families more often for emotional support.
Suggestions for Further Research
From the literature review and interviews, possibilities for future research presented
themselves. First, there is a lack of research comparing hospital school programs, researching
best practices and collecting feedback from a myriad of team members. A survey or form of
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 25
research that produced quantitative data could reach more individuals than interviews may within
a specific time frame. Hospital schools are working with children of all age groups and of all
backgrounds, so future research may study possible education interventions for international
students who come to the United States and do not speak the same language as most of their
caregivers and who are experiencing culture shock. Another interesting topic worth future
research would be a study comparing hospital schools that are partnered with public schools
versus a hospital department to examine differences in implementation, effectiveness, teacher
qualifications and standards.
Conclusion
The hospital-to-school transition process involves a set of concerns and challenges
specific to each child. Transition programs vary in structure and partnership by hospital, as there
is no universal standard for hospital school programs or for teacher qualifications. The literature
review section of this paper, interviews and a site visit reveal common elements that team
members advocate as necessary for a successful transition program. These elements include in-
person and technology-based communication and collaboration between team members,
common school protocols concerning children’s re-entry and continued emotional and social
support for the child after their hospitalization. Possible recommendations Duke Hospital School
may consider is a restructuring of staff responsibilities, designating an “advocate” for each child
and encouraging communication between team members via email copying and a timeline of
updates during the transition process. Research is beginning to explore best practices of hospital
school transition programs, though literature, interviews and site visits have confirmed themes of
essential qualities of an effective hospital-to-school transition program.
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 26
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Appendix A
Interview Questions for Team members
For all Team members
Full name: ______________________________
Age : __________________________________
Hometown (City, State, Country): ______________________________________________
Age and length of illness and hospitalization: _____________________________________
Hospital team member is associated with: __________________________________________
Student/Child
How was your experience in school prior to hospitalization? (did you like school, did it come
easily, was it public or was it private)
During your hospitalization, what kind of education did you receive/participate in?
How was your learning environment organized? (learning one-on-one, with other students, one
teacher, many teachers, etc.)
What connections did you have to your home school during hospitalization?
Once you were done receiving treatment, how soon did you go back to school?
Did you go back to the grade you would have been in without hospitalization or a grade behind?
Did you go back to the same school you attended prior to your illness?
In the transition back to school, what did you feel like helped you? What was difficult?
How did your transition function in terms of teachers—were you moved from your hospital
teacher directly to a different one, did they work together with you, etc.?
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 30
What was the most helpful aspect of your education while hospitalized? What do you wish had
been in place?
What advice or recommendations do you have for other students transitioning from a hospital
school to either a home school or their previous school?
Parent
How did you perceive your child’s educational experience before hospitalization (was school
easy for them, hard, did they enjoy it, what were their best subjects, etc.)?
How did your child deal with being away from their home school?
What was the hospital education like?
How did the education your child received in the hospital compare to their home school?
How do you feel about your child’s education staying on track during their hospitalization and
transition?
How did the transition from hospital school to your child’s home school transpire?
When your child got back to their home school, what was their experience like? (were they on
track, behind, etc.)
How much power did your child have in decisions relating to their school throughout
hospitalization, treatment and recovery?
What was the most difficult aspect of transitioning back to the home school?
School Interventionist
When do you first have contact with a child and their family?
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 31
What communication or information do you receive about a patient and their academic progress
during their treatment?
Who do you communicate with most about the child’s progress during treatment and
hospitalization?
What kind of communication and interaction do you wish were in place or is in place with the
child’s other educators?
Are there any set protocols or steps for executing a transition program?
What aspects do you think make the transition difficult or easy?
What do you think worked about the transition program?
What can be improved during the transition process as a patient moves from hospital to school?
Hospital Teacher
When do you start working with this child (before, when, after treatment started)?
What was this child like as a student?
What kind of communication did you have with teachers from this child’s home school or
original school?
What kind of coursework did this child complete during treatment?
Was the child staying on track while being treated, or were they behind schedule for their grade
level?
After treatment, how did the transition work for the child going back to their home school?
What kind of communication was in place with the child, family, or teachers after they started at
their home school or original school?
What worked in the transition back to their home school?
CREATING A SUCCESSFUL SCHOOL RE-‐ENTRY PROGRAM AT DUKE HOSPITAL SCHOOL 32
What could have been improved in the transition process?
What differences in transition can you identify between children who have had a chronic illness
since birth and children who have developed a chronic illness later in their life?
What programs or systems are in place to address the child’s emotional needs?
What other issues remain that we haven’t discussed?