final paper

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

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


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.


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


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


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,


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


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).


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


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


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


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.


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


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


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.


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


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


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


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


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.


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


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


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


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.


References

Bryner, J., DiFusco, L. A., Fleming, R., Robarge, D. M., Selekman, J., Selser, K., Westendorf,

G., & Wyckoff, L. (2012). Transition planning for students with chronic health

conditions. In K. Selser (Ed.), National Association of School Nurses. Retrieved from

http://www.nasn.org/PolicyAdvocacy/PositionPapersandReports/NASNIssueBriefsFullVi

ew/tabid/445/ArticleId/303/Transition-Planning-for-Students-with-Chronic-Health-

Conditions-2012

Campbell, L., & St. Leger, P. (2008). Evaluation of a school-linked program for children with

cancer. Health Education, 108(2), 117-129. doi: 10.1108/09654280810855577. Retrieved

from http://search.proquest.com.proxy.lib.duke.edu/docview/1019989112

Cancer and blood diseases institute: Hospital school program. Retrieved from Cincinnati

Children's website: http://www.cincinnatichildrens.org/service/c/cancer-

blood/patients/school-intervention/.

Clemens, E. V. (2010). Tough transitions: Mental health care professionals' perception of the

psychiatric hospital to school transition. Residential treatment for children & youth,

27(4), 243 - 263. doi: 10.1080/0886571X.2010.520631. Retrieved from

http://unc.summon.serialssolutions.com.libproxy.lib.unc.edu/document/show?id=FETCH

MERGED-LOGICAL-c1223-

3a65de2aa96903338439439ff3737cb91c42623214fbb02e32d837f50e8dc77f1&s.cmd=set

RangeFilter%28PublicationDate%2C2008%3A%2A%29&s.q=school+transition+from+h

ospital+schools

Cohen, M. S. (1999). Families coping with childhood chronic illness: A research review.

Families, Systems, & Health, 17(2), 149-164. doi: 10.1037/h0089879


Duke hospital school. Retrieved from Durham Public Schools website:

http://www.dpsnc.net/schools/school-profiles/secondary-school-list/hospital-school.

Elam, M. & Irwin, M.K. (2011). Are we leaving children with chronic illness behind?.

Cincinnati Children's Hospital Medical Center.

Elam, M., & Irwin, M. K. (2013, September). School support for students with chronic medical

conditions. Council for Exceptional Children.

Green, J., Nisselle, A., & Scrimshaw, C. (2011). Transforming children’s health spaces into

learning places. Health Education, 111(2), 103-116. doi: 10.1108/09654281111108553.

Retrieved from http://ehis.ebscohost.com.libproxy.lib.unc.edu/ehost/detail?sid=a4fae3be-

afd5-4ded-b50f-

5d0f523c6852%40sessionmgr111&vid=1&hid=106&bdata=JnNpdGU9ZWhvc3QtbGl2

ZSZzY29wZT1zaXRl#db=eric&AN=EJ922519

Hamlet, H. S., Gergar, P. G., & Schaefer, B. A. (2011). Students living with chronic illness: the

school counselor’s role. Professional School Counseling, 14(3), 202-210. Retrieved from

http://go.galegroup.com.proxy.lib.duke.edu/ps/i.do?action=interpret&id=GALE|A250134

008&v=2.1&u=duke_perkins&it=r&p=AONE&sw=w&authCount=1

Hardy, K. K. Children's National Medical Center, (2013). Learning issues in children with

cancer: What medical providers and school staff can do to promote academic success for

survivorsThe George Washington University Medical Center.

Marchitto, C. (2010). Transitioning the needs of children with chronic illness: Exploring

communication between hospitals and school settings. (Master's thesis, Providence

College), Available from Digital Commons. Retrieved from


http://digitalcommons.providence.edu/cgi/viewcontent.cgi?article=1058&context=social

wrk_students

McCabe, P. C. & Shaw, S.R. (2007). Hospital-to-school transition for children with chronic

illness: Meeting the new challenges of an evolving health care system. Psychology in the

Schools, 45(1), 74-87. doi: 10.1002/pits.20280. Retrieved from

http://onlinelibrary.wiley.com.libproxy.lib.unc.edu/doi/10.1002/pits.20280/abstract

Savina, E. A., & Simon, J. B. (2010). Transitioning children from psychiatric hospitals to

schools: The role of the special educator. Residential Treatment for Children & Youth,

27(1), 41-54. doi: 10.1080/08865710903508084. Retrieved from

http://ehis.ebscohost.com.libproxy.lib.unc.edu/ehost/detail?sid=c24a5201-abad-46db-

ac59-

85da0cb33ce3%40sessionmgr198&vid=1&hid=106&bdata=JnNpdGU9ZWhvc3QtbGl2

ZSZzY29wZT1zaXRl#db=eric&AN=EJ871329

Thies, K. M. (1999). Identifying the educational implications of chronic illness in school

children. Journal of School Health, 69(10), 392-397. doi: 10.1111/j.1746-

1561.1999.tb06354.x


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.?


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?


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?


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?