The Current Study’s Hospital-Based School Program

The HBSP of focus in this study is based in a free-standing, 354-bed children’s hospital in the midwestern United States. The hospital is funded predominantly through state grants and donations. Based on the hospital’s 2020 financial reports, it had 17,960 admissions and observation stays that year. The hospital has 456 inpatient beds across medical services and is the only Emergency Department Behavioral Health Access Center for the state. It serves more than 1,500 inpatient students per year, supporting children from nearly 90% of the counties across the state. Approximately 25% of the HBSP’s patients identify as non-White. Hundreds of students are from rural areas with limited access to medically related resources (e.g., outpatient clinics, full service hospitals).

During the academic year during which the study was conducted, the school program was staffed by seven full-time and four-part time licensed teachers, one full-time school manager who is also a licensed teacher, and one part-time instructional assistant who provide services to inpatient students. The HBSP serves three primary types of students with medical needs: hospitalized students who are medically stable as defined by the medical team; partially hospitalized students receiving care for eating disorders; and students in select outpatient clinics (i.e., cancer, blood disorders, cystic fibrosis, during dialysis/after kidney transplant, and traumatic brain injury). These specific outpatient clinics have teacher support due to the increased complexity of the medical needs. Due to constantly changing rates of hospitalized youth at a given time, exact student-teacher ratios cannot be calculated.

All hospitalized students receive an initial consult with an HBSP teacher on the first school day (i.e., Monday through Friday) of their admission. Those with limited duration stays, when asked not to consult by the medical team, or those with medical status of critical or unstable do not receive a consult. In the outpatient setting, all students receiving dialysis have an initial consultation at their first treatment session and meet with a teacher every return session. Students attending the other outpatient clinics with teacher support connect to the school program via care transfer from the inpatient school liaison at the time of student discharge from the hospital. The HBSP runs according to the state’s academic calendar, except for students in the three areas of inpatient behavioral health, partial hospitalization for eating disorders, and inpatient rehabilitation (these units have more staffing and services, are open year-round, and have no extended summer break), and is closed for federally recognized holidays.

The primary services provided by the HBSP are broadly broken down into (a) direct instruction, or teaching; and (b) advocacy services. During direct instruction, students receive educational intervention as dictated by the school of record while they are receiving medical services. Direct instruction is carried out in small-group classes (e.g., inpatient psychiatric hospitalized students, partial hospitalization for eating disorders, inpatient cancer center) or on an individual basis while medically stable for hospitalized patients and individuals receiving dialysis due to the intensity of dialysis treatment as tolerated by the student. Other than students going to and from dialysis, and students at the partial hospitalization program for eating disorders, no outpatient student receives school program direction instruction.

Advocacy services encompass a wide array of supports. This includes (a) education to parent/guardian, school personnel, administrator(s), and/or peers regarding the child’s medical and educational needs; and (b) engagement in school meetings for re-entry, such as advocating for Individualized Education Programs (IEPs) for students eligible for special education services or 504 Plan meetings for students needing educational accommodations for medical reasons. Advocacy has also led to development of multiple materials to support collaboration between families and schools including transition materials, special education resources, and forms for a variety of needs (e.g., medical homebound forms).

Procedures

To answer the research questions, the study sought to examine the perspectives of private and public school educators who had a student admitted to a midwestern children’s hospital and received services from the HBSP at some point during the 2021–2022 school year. The HBSP gathered contact information on school personnel associated with the hospitalized children at initial consult. Upon university Institutional Review Board (IRB) approval, an HBSP staff member shared the contact information (e.g., email addresses) of those school personnel with the first and second authors. Educators whose students had received services from the HBSP at any point during the 2021–22 academic year were emailed a link to complete an online Qualtrics (2018) survey comprised of items from measures outlined below, and included forced-choice, Likert, multiple-choice, and open-ended items. Two reminder emails were sent, and the survey was open for approximately three weeks. Participants were eligible to receive a small payment (i.e., Amazon gift card) upon completion of data collection.

Sample Demographics

School of record personnel completed self-demographic items related to gender identification, years of teaching experience, highest degree earned, area of certification (e.g., general education, special education, administrator), and grade level(s) taught (see Table 1). A total of 39 survey responses were analyzed after the data were cleaned. Results indicated that survey respondents are predominantly female (80%) and identified as white (92.5%). Respondents also indicated that they were predominantly from urban (45%) or suburban (30%) settings and 75% had a master’s degree or equivalent. For number of years as an educator, the most common response was 21 or more years (40%) followed by 11–15 years (22.5%). Overall, 75% indicated that they had more than 10 years’ experience. Based on State Department of Education demographics, the sample had more years’ experience in education than is typical for educators within the state (55.7% of state educators have more than 10 years’ experience; Indiana Department of Education, 2023). Finally, although over 90% of surveys were emailed to public school educators, the survey did not collect specific data related to school type (e.g., public school, private school, charter school) by respondent.

Measures

The online survey was adapted from two existing measures, the School Reintegration Questionnaire (SRQ; Marraccini et al., 2019) and the School Health Questionnaire (SHQ; Clay et al., 2004). Items in the survey were also loosely based on past studies of similar topics (Blizzard et al., 2016; Clay et al., 2004; Vickers & Romero, 2021). Specifically, seven items from the SRQ were either directly incorporated (e.g., “Which of the following are typically included in your school’s re-entry plans for students returning to school following hospitalization?”) or adapted into the current survey. For instance, the SRQ has separate items asking participants about accommodations for various academically oriented tasks such as for class attendance, assignments, and test taking. To simplify, we combined these items into one question. Four items from the SHQ were adapted into questions on the current survey. Specifically, items such as “On a scale of 1 to 4, with 1 being not comfortable at all and 4 being very comfortable, please rate your comfort level in having a student with a chronic illness in your classroom/school” and “Where do you get most of your information about pediatric chronic illnesses?” were directly modeled off items from the SHQ. Open-ended items were developed directly in collaboration with the researchers and the school personnel at the HBSP.

Some open-ended items were meant to expand upon previous survey responses as modeled in the SRQ and SHQ. For instance, if a respondent selected “other” for the item asking about the types of services the HBSP helped develop for students returning to school following hospitalization, respondents were prompted to “please describe ‘other.’” Other open-ended items were designed specifically to capture perspectives of participants not otherwise included in the survey items specifically related to HBSP services more broadly from a program evaluation perspective. It should be noted that psychometric properties of the original measures (i.e., the SRQ and SHQ) are not available in published literature.

The final survey consisted of 21 content items and eight demographic items. Content items included multiple-choice/forced-choice items related to satisfaction of HBSP services, the types of services offered by the HBSP, the types of services offered in student reentry plans, personnel involved in reentry plans, and procedures for reentry the HBSP should offer. Open-ended response items were also included on items asking about satisfaction of HBSP services (e.g., “What is your reasoning for your answer to Question 5?”) and the types of services offered by the HBSP not previously listed in the survey item. Finally, two open-ended questions asked, “What has been the most helpful thing(s) about the services you and/or your student received from [redacted]?” and “What would improve the services provided by the [redacted]?”

Survey items were piloted with three teachers—one general education teachers and two special education teachers—at the elementary and secondary levels across the state. Adjustments to the wording of some items were made based on their feedback. A full copy of the survey is available from the first author upon request.

Data Analysis

A total of 291 surveys were initially sent. After accounting for and attempting to rectify emails that were undeliverable/no longer valid, a total of 199 emails were successfully sent. The final sample yielded 39 respondents who completed some portion of the survey and were included for analysis, yielding a 19.6% response rate. All data from the survey was downloaded into an Excel file, which was used to clean the data from partial responses that were deemed unusable.

Cronbach’s alpha on the non-demographic questions indicated a good degree of reliability (α = 0.88). Correlations were then run between the services and accommodations used and the level of satisfaction with the program. Correlations were also run between the services and accommodations used and the respondents’ years of experience to determine if participants became more aware of additional services with additional years of service. All p cut-off values were set to 0.05. Average numbers of accommodations and services utilized were then analyzed by locale (e.g., urban, suburban, rural), and descriptive data for quality of individual services were also examined.

The open-ended questions were also examined to determine the most common responses. Familiarity was established by reading through all of the responses several times. An inductive thematic analysis model (Braun & Clark, 2006) was used to assign codes to the responses and then condensed into overall themes by the second author. A single author identified the initial codes and themes to avoid issues with inter-rater reliability. However, the first two authors discussed and agreed upon the ultimate interpretation for broader dependability. This interpretation was then examined with the quantitative analyses described above to triangulate a more complete picture of the educators’ opinions and attitudes toward the school program services.

Individuals Involved in Services

First, to understand the elements of school re-entry plans currently in place, we asked participants about the individuals and services involved in their schools. Consistent with items modeled from the SRQ, response options included mandatory, optional, not available, and unsure/unknown. Most commonly, the student and their family were almost always involved in re-entry planning (79.3% and 90.3%, respectively; see Table 2). School counselors (77.8%) and general education teachers (54.8%) were also almost always involved, whereas the following individuals were sometimes involved: assistant principals (62.1%), school psychologists (58.3%), special education teachers (48.3%), and school nurses (48.1%). Ten respondents (32.2%) indicated principals were never involved while eight respondents (33.3%) indicated school psychologists were never involved.

Elements Included in Re-Entry Plans

In terms of elements involved in a typical re-entry plan, participants rated the items from their perspective of what was typical “standard operating procedure” for their school. Consideration of hospital recommendations was most commonly mandatory (63.9%), while consideration of previous school-based evaluations (41.7%) and recommendations by outside mental health professionals (36.1%) and family members (33.3%) were also endorsed as being mandatory. A vast majority of other re-entry plan elements were considered optional (e.g., recommendations provided by the student, a gradual return to school using transition space outside of school). For each response option, a notable number of respondents were unsure of what elements were available as part of a typical re-entry plan. See Table 3 for a summary of elements typically included in re-entry plans.

Available Services and Accommodations

Next, respondents indicated which services and accommodations the HBSP helped to develop for their student’s re-entry. Response options were available and not available. In terms of services the HBSP helps develop and the school of record provides, support with time management and assignment make-up was most commonly endorsed as available (51.5%), with students checking in regularly with an adult endorsed by 45.5% of participants (see Table 4). Peer and adult mentoring were most commonly endorsed as not available (90.9%) while mental health supports, such as individual (60.6%) and group counseling (72.7%) were also commonly not available. Additionally, supports such as social skills groups (75.8%), or a transition space within (60.6%) or outside of school (75.8%), were also typically not available. In terms of accommodations, those most directly related to student attendance and academic performance were often rated as available (see Table 5). For instance, excused absences following the return to school (92.8%), extended deadlines for assignments (85.7%), missing work forgiveness (85.7%), and reduced assignments (82.1%) were commonly endorsed as available. Interestingly, nurse visits were the accommodation most often listed as not available (82.1%).

Procedures Provided by HBSP

Respondents were then asked to indicate which services they would find most helpful for HBSP to provide (see Table 6). Most participants endorsed that holding meetings with families about re-entry needs (70.6%), developing individualized re-entry plans (61.8%), meeting with the student about their re-entry needs (55.9%), and phone communication between the school of record and hospital staff (44.1%) should be mandatory services offered by the HBSP. Most other services, with the exception of in-person visits by school staff to the hospital (20.6% endorsed not needed), were endorsed most frequently as optional services the HBSP should provide. Via open-ended responses, participants indicated using access to online/hybrid options and utilizing partial or shortened days as additional services for a student’s gradual return to school.

Overall Evaluation of HBSP Services

When asked to evaluate the HBSP, over 75% of respondents indicated that they were either somewhat or very satisfied with their HBSP experience (see Table 7). When asked about more specific aspects of the interaction, the highest proportion of participants agreed or strongly agreed that HBSP helped to create an individualized re-entry plan for the student and that they communicated well with the educator (both at 61.5%). Open-ended responses also indicated that the most helpful aspects of the HBSP were the overarching communication, support, and recommendations/suggestions for school of record teachers. Common justifications captured via open-ended responses for the overall positive satisfaction scores included communication quality, helping students to keep up with work, or accessible and timely communication. For those respondents who indicated no answer or neutral responses, they most often cited a lack of memory or lack of understanding for the HBSP role.

Demographic Characteristics and Trends in Responses

Further analyses examined the relationships between years’ experience, satisfaction, and number of services or accommodations reported. One statistically significant correlation was found between years of experience and number of accommodations reported (Spearman’s rho = 0.417, p = 0.027, n = 28). In addition, there was some evidence of different perspectives, services, and accommodations reported based on school locale (see Figure 1), though no statistically significant correlations were found. Unfortunately, our sample size did not allow for additional inferential statistics to be run on these numbers.

When considering respondents’ knowledge and training regarding students’ chronic health conditions, all respondents indicated that they were at least somewhat comfortable having students with chronic illnesses in their classroom, despite only 7.89% receiving school-provided education on pediatric chronic illness each year. When asked where they most commonly received their information, respondents most frequently indicated parents, the school nurse, the internet, and/or self-education. Respondents were least likely to indicate receiving information from principals, other teachers/professors, academic journals, or professional newsletters/magazines.

Open-Ended Responses

Finally, participants completed open-ended response items throughout the survey. One item sought to identify specific challenges students with chronic illness encounter while in school. Challenges respondents indicated were most common from the student perspective included keeping up or getting caught up with material and attendance as well as social isolation and the need for private space. Teachers also mentioned logistical challenges they and/or the school faced upon student return, including transportation, implementing Section 504 plans, developing a routine, and keeping the classroom free from germs.

When asked about potential areas for further improvement, communication was the main concern for respondents. Communication on the specific role or available services from the HBSP, discharge instructions and re-entry plans, as well as the frequency of communication were all noted as important aspects to keep services moving forward smoothly. Some respondents also wondered about potential opportunities for students to join class virtually while still inpatient or on medical homebound.

Communication Between Schools and the HBSP

First, schools’ requests for additional communication from the HBSP to the school is an important element to consider. Communication is an essential feature of successful collaboration between schools and families (Malchar et al., 2020). Indeed, communication is also foundational for creating a unified plan of support for a student returning to school upon reintegration from inpatient hospitalization (Committee on School Health, 2000; Groh et al., 2020; Weiss et al., 2015). Communication should be multidisciplinary (Groh et al., 2020) and triangulated between hospital staff and medical professionals, school staff (i.e., teachers, administrators, school-based mental health personnel), and families (Committee on School Health, 2000). In this domain, advocates support the identification of a school reintegration liaison (SRL) to coordinate communication among all relevant stakeholders (Clemens et al., 2011; Moore et al., 2009).

An SRL plays an important role in supporting cross-system collaboration to facilitate communication among stakeholders in the process of developing a comprehensive reintegration plan for the student (Savina et al., 2014). HBSPs should consider this role and determine who the best person for this would be. Communication plans should consider essential elements such as educational goals (Committee on School Health, 2000) as well as a structured reintegration plan (Marraccini et al., 2019).

Comprehensive Reintegration Plans

As previously stated, CSHCN face a host of academic, social, socioemotional, and medical needs as they progress through school. As such, comprehensive reintegration plans must capture current level of functioning, goals, and plans to support the student across functioning domains (Marraccini et al., 2019)—in short, they should be individualized for the student and the illness (Marraccini & Pittleman, 2022; Wikel & Markelz, 2023). Such a plan should include a discussion of the individual’s level of functioning, timelines for discharge, and recommendations for the individual upon discharge (Hall & DuBois, 2020). This coordination helps ensure the student’s needs a being met while preventing the duplication of services and minimizing confusion (Hall & DuBois, 2020; Weiss et al., 2015).

HBSPs can coordinate with schools of record to develop plans that include considerations for academics, socioemotional needs, traumatic stress reactions (i.e., traumatic stress reaction after a life-threatening illness, injury, or medical procedure), safety plans, medical needs, environmental considerations (e.g., where classroom materials are stored), interpersonal considerations, and social (re)integration (Le Brocque et al., 2020; Marraccini et al., 2019). Plans should be reviewed and modified as needed (Clemens et al., 2011; Marraccini & Pittleman, 2022).

Training School of Record Staff

Previous studies have found teachers reported feeling anxious about having students with chronic illness in their classrooms for fear of a medical emergency happening in their room, or not knowing the proper way to respond should such an emergency occur (Hinton & Kirk, 2015; Olson et al., 2004; West et al., 2013). Educators also reported concerns related to how much time and attention would be required to work with and support the student with chronic illness (Olson et al., 2004). HBSP staff can play a critical role in educating teachers about how the child’s illness may manifest in class, such as the academic, socioemotional, and/or cognitive impacts of the child’s illness (Hinton & Kirk, 2015). Indeed, when teachers received factual information related to a child’s medical condition, they reported feeling more confident in being able to support the child in their classroom (Canter & Roberts, 2012).

Relatedly, evidence suggests that teachers are more willing to implement accommodations that they perceive to be less burdensome (West et al., 2013). HBSPs can play an important role in providing evidence-based information related to the student’s medical condition (Wikel & Markelz, 2023) as well as best practices related to student needs, such as academic accommodations, social/interpersonal supports, and environmental considerations. In fact, when trainings have been provided, educators report increased positive attitudes and knowledge related to specific illnesses, and feeling less anxious about having a student with healthcare needs in their classroom (Hinton & Kirk, 2015). There is also some evidence to indicate training can be effectively delivered remotely, and was endorsed as a preferred method by teachers (Brown et al., 2011). Ultimately, development of additional training programs and evaluation of subsequent outcomes is needed (Hinton & Kirk, 2015).