Commentary

School re-entry following chronic pain and disability: A pathway to success

Ethan Benore, Amy Fahrenkamp, Oleh Zhakunets, and Gerard A. Banez

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A brief review of the problem

Chronic pain (pain that persists for at least three months) is more common than teachers may estimate, affecting up to 40% of school-aged children (Stanford et al., 2008; King et al., 2011). A small but significant number of these adolescents (3-8%) experience worsening disability due to chronic pain (Huguet & Miró, 2008). These adolescents often miss numerous days of school, show decline in academic performance, withdraw from social interaction, and are ineligible to fully participate in athletics or other extracurricular events (Logan et al., 2008; Dick & Pillai Riddell, 2010; Kashikar-Zuck et al., 2010; Agoston et al., 2016). Many take online classes or receive home tutoring, yet still fall behind academically; others have simply stopped all academic work. Once a child has been removed from the typical school environment, reintegrating back into school can be stressful and difficult to navigate.

Fortunately, children with significant impairment related to chronic pain respond well to intensive rehabilitation. Multiple treatment centers have published outcomes supporting the clinical effectiveness of intensive interdisciplinary pain management (Hechler et al., 2015), which involves the combined therapies of medicine, physical therapy, occupational therapy, psychology and recreational therapy—offering 4-8 hours of active treatment each day for 2-4 weeks on average. Some programs also target improved school functioning, offering tutoring, structured time to complete missing assignments, and/or active problem-solving for barriers to school performance (Logan & Simons, 2010). However, less attention has been given to educating school personnel on ways to promote student progress once these students return to a school setting (Boutilier & King, 2013; Reid et al., 2016).

School re-entry models already exist for other medical conditions, such as cancer (Katz et al., 1992; Prevatt et al., 2000) and chronic illness in general (Kliebenstein & Broome, 2000), yet less is known regarding recommended models for school re-entry with children experiencing chronic pain (Jones et al., 2014). Some clinical experts propose graduated return to school (Walker, 2004), while others emphasize re-integration into a full school schedule (Banez et al., 2014). Still others underscore that, regardless of specific accommodations for each student, providing school personnel with relevant information regarding students’ medical conditions is an essential component to their success in school (Brown 2006; Jones et al. 2014). This can be extended further to either pain-specific education for teachers (Logan et al., 2007a) or pain-based intervention with school nurses (Larsson & Carlsson, 1996).

Recently, a study was published assessing teachers’ responses to supporting a child with chronic pain in the school classroom in Spain (Solé et al., 2018). Results indicated teachers acknowledge they provide both supportive and unhelpful responses to the student experiencing pain in the classroom. In addition, teachers struggle with modifying academic instruction for students with high frequency of absences—missing both full days or repeatedly missing selective courses/activities. The authors conclude that guidelines are needed to help teachers support the child’s attendance and functioning within the school setting.

As one of several programs across the US treating children with chronic pain, our program evaluates almost 300 children annually and provides intensive interdisciplinary pain rehabilitation for over 100 children per year. Our children report an average of over 11 days of school absences each per month. Our program, like others, reports positive outcomes (Banez et al. 2014; Kempert et al., 2017; Benore et al., 2018); however our program also has a teacher from our local school district embedded in the program to assist with instruction, modeling effective classroom behavior, and supporting school re-entry. Following our program, most children return to their local school, stay in school the full school day, and resume desired school and extracurricular activities (Banez et al., 2014). Based upon over 10 years of clinical practice, this paper provides an updated review of existing literature on school re-entry for children with chronic pain, as well as practical guidelines and accommodations to optimize a child’s successful school re-entry.

Understanding all perspectives

Whether the student has missed weeks of school due to personal choice, doctor’s orders, or involvement in intensive therapy, the key to successful re-entry into school is a thoughtful process with active involvement of all parties (Boutilier & King, 2013)—the student, the parent(s), the school staff, the teachers, and the medical and rehabilitation team. Each party has their own perspective of the student’s history and struggle (Logan & Curran, 2005; Logan et al., 2012; Logan et al., 2017). Each also has their own expectations and goals regarding school attendance, participation, academic progress, and social functioning. Understanding each other’s perspectives is essential to developing and implementing a school re-integration plan for students with chronic pain.

Family and child. While it seems obvious to involve parents and the child in this process, it is important to understand their perspective (Logan et al. 2012; Logan et al. 2017). Some families feel hopeless in this process—dwelling on the months of academic decline and perceived lack of support. Other families become defensive—ready to fight and validate the suffering of their child. Still others fully understand their needs, yet lack the ability to successfully advocate for their child, falling into a passive role in this process.

Children often feel overwhelmed by the demands from parents, teachers, and medical professionals alike. They are often anxious to return to school, fearing failure or embarrassment related to their pain and disability (e.g. Walker et al., 2009). Children also report a sense of social isolation due to the misunderstanding of this invisible illness (Walker, 2004) and many can be victims of bullying (Fales et al., 2018). For these reasons, validating and supporting the child may help him/her feel more confident to contribute to school re-entry planning. It is wise to include the family throughout the entire re-entry process so the child can realize that everyone is on the same team supporting his/her academic success.

School staff. From the perspective of school personnel, mandates by states require students to attend school and complete required assignments. There are models to assess and manage medical concerns in the school setting (Power et al., 1999), yet many school staff struggle to understand chronic pain. Without specific medical instruction, teachers and principals are bound to hold children with chronic pain to the same standards as other students. Truancy is often a topic of debate for children with pain-associated disability. Without adequate education about the student’s condition, teachers may respond to chronic pain symptoms (e.g. fatigue, grimacing, depressed mood) as either lack of motivation or direct opposition (Kliebenstein & Broome, 2000; Logan et al., 2005; Logan et al., 2007b; Solé et al. 2018). Pain complaints and efforts to cope with pain in the classroom (e.g. distraction) may also be perceived as disruptive to the class or efforts to avoid the expected workload (i.e. faking it).

Once the school staff (especially teachers) understand the nature of chronic pain, they can play a valuable role in the success of a school re-entry program. Teachers and administrators possess intimate knowledge of the school environment (physical and social), the curriculum, and the student’s academic strengths and weaknesses. When the goal of academic recovery or course completion is understood within the context of chronic pain, teachers may contribute valuable suggestions on how to modify coursework, restructure the school setting or schedule, and provide the appropriate supports.

Medical/rehabilitation staff. Finally, representatives from every professional discipline in the child’s rehabilitation are helpful in the development and implementation of the student’s re-integration into school. Representatives from psychology, medicine, therapy services, social work, and teaching staff all possess specific expertise in chronic pain and have specific knowledge of the child’s current abilities and limitations. These professionals can accurately explain the nature of chronic pain to the school personnel and provide rationale for accommodations critical to increase the student’s participation and progress in an academic environment.

A shared philosophy of chronic pain

Once the family, student, school personnel, and rehabilitation team adequately appreciate the perspectives of one another, it is important to develop a shared understanding of chronic pain that can support school re-entry (see Appendix A; see also Zeltzer & Schlank, 2005). This philosophical approach to chronic pain, supported by research, is necessary to reduce confusion and increase cooperation among different disciplines. The text box provides a case conceptualization of school re-entry applying this philosophy. A more detailed explanation is below.

• First and foremost, chronic pain is a real condition. Believing and validating the student’s pain is more helpful than challenging him/her about the veracity of pain, which may create a barrier to collaborative educational planning (Logan et al., 2007b). These children are suffering, but they are often not at higher risk of injury or illness in the school building than at home. Therefore, having chronic pain does not warrant an excused absence.
• Children must learn to function with pain in school. Continuing appropriate school activities (with modifications) is part of the treatment of chronic pain. However, prolonged conversations or repeated pain assessments are unnecessary and may lead to increased pain complaints and related impairments. Instead of challenging or constantly assessing the student’s chronic pain, targeted encouragement for school attendance and participation despite the constant sensation of pain may help increase their confidence to be successful in school. These children can excel when surrounded by adults and peers who understand them, actively support them, and demonstrate a belief that the child can get better.
• Chronic pain requires many layers of intervention. Beyond medications, children must adhere to regular physical therapies to strengthen and condition their bodies, as well as mind-body or psychological exercises to calm their nervous system. Although chronic pain is often not directly caused by emotional difficulties, anxiety and depression are common in chronic pain and should be considered an integral component of students’ re-entry planning. Children often are removed from activities that give them a sense of identity and a network of peers; it is stressful reinitiating these activities and friendships, or coping with the loss of them.
• Finally, pain will not go away immediately—improvement often takes months and this is usually after a child resumes normal functioning. Even after pain improves, most children will have both good and bad days of varying pain intensity. School re-entry involves a healthy dose of patience, hope and perseverance.

For school personnel, implementation of this philosophy will likely shape their interaction with the student, helping them to develop and apply a limited number of accommodations within the classroom. They will focus on a child’s functioning (e.g. attendance, participation, using pain management skills in the classroom) before any academic success. Teachers can reinforce the student at each step in this process. Teachers can also include the student in classroom activities and address interactions between students so that the student with chronic pain feels included and supported, without feeling special or different. Teachers can also be on the lookout for both overt and subtle forms of bullying, a common concern for children with chronic pain which makes school an unsafe environment.

Teachers and school personnel also have to support each other when teaching children with chronic pain. Using a shared philosophy, teachers can avoid unhealthy forms of support or splitting among teachers—conflict between teachers about the student creates a barrier to success. Teachers must be careful not to over-accommodate when supporting functioning. Teachers should avoid interpersonal battles, guilt trips, belittling, or other unhealthy forms of manipulation to encourage class participation or academic performance. Finally, the school should set up a process for ongoing monitoring and management of academic supports. It is likely as a child improves that some supports may be removed. However, the child should be encouraged to advocate for himself/herself in the case that some supports need to be added or modified.

Careful planning

School re-integration for students with chronic pain begins as soon as the family is committed to chronic pain rehabilitation. Whether periodic outpatient visits or intensive hospital-based programming, rehabilitation begins with goals for discharge (i.e. school attendance and academic progress) and with the focus on improving independent functioning. Parents are responsible for making connections with appropriate personnel in the school to prepare the child for eventual return. Often, school counselors serve as the point of contact. Ongoing communication should address the following: compiling a concise list of assignments/materials to aid with academic recovery, introducing school personnel to resources regarding chronic pain in children, and arranging the school re-entry planning conference.

If the child enrolls in an intensive rehabilitation program, a contact person (e.g. teacher/educational specialist) from the treatment team should communicate with the school to gather relevant information for eventual re-entry (e.g. school contact list, academic data, history of school involvement). It may be helpful for professionals working with the child outside of school to assist with study skills and assess learning difficulties (Dick & Pillai Riddell, 2010) as these can complicate academic progress and often go unnoticed in the presence of chronic pain.

After initial contact has been made to bring together all perspectives of the student’s care team (i.e. family, student, school, rehabilitation team), a conference between medical/rehabilitation staff and school staff lays the foundation for school re-entry. This serves as a planning meeting, a team-building exercise, and even a rite of passage for this child who is working so hard in rehabilitation with hopes to transition back to school. A successful conference may take as little as 15-20 minutes and can even occur over the phone. As suggested in previous literature regarding school re-integration (Prevatt et al., 2000), these meetings target a review of the student’s medical condition and related psychosocial issues that may impact their learning or functioning in school (see Appendix C). This meeting allows the medical and therapy staff to share information with the school to help them better understand chronic pain and embrace the returning student, providing appropriate classroom accommodations and emotional support. Standard recommendations for students with chronic pain should be discussed (see Appendix D), yet it is important to consider adaptations to these accommodations for the specific needs of a given student. This meeting also allows school personnel to ask relevant questions as they consider what accommodations and services to provide (see Appendix E for Frequently Asked Questions).

Detailing common recommendations

The following recommendations describe important areas to consider to maintain students’ progress in using pain management and coping skills for their chronic pain (see Appendix D). However, there may be condition-specific recommendations (not included here) that the team must also consider. Of note, when aiming for improved independent functioning, often offering the fewest accommodations possible (or weaning accommodations over time) is the best way to strike a balance between promoting independent functioning and unintentionally extending the student’s disability status.

Medical accommodations. From a medical standpoint, it is important to ensure that school officials understand aspects of the patient’s medical care. This involves a basic understanding of the chronic pain condition. For other comorbid symptoms or additional medical diagnoses, it is important that school teachers and nursing staff be knowledgeable of the student’s medication regimen so as to ensure medication adherence throughout the school day (Timmerman et al., 2016). There may be preventative medications to take on a regular basis. There may also be acute medical interventions that could safely be performed in the school setting. School nurses should provide a place for students to store their medication and other medical equipment, and should help monitor response to, or side effect from, medications. Finally, school officials need assurance that the child is medically stable and capable of attending school.

Children with chronic pain may also have special dietary needs (Brown, 2006). Depending on the age of the child, it may also be important for school staff to encourage appropriate nutrition (e.g. snacks during the day). It is a common recommendation to prevent dehydration as this will influence chronic pain. Children are often recommended to drink eight or more glasses of water per day. This involves carrying a water bottle throughout the school day (Shah et al., 2004). This also involves providing unrestricted access to restrooms given the increased fluid intake. A final recommendation for medical care involves providing any appropriate medical precautions the school staff should be aware of (including ‘no precautions’). It is very helpful for school staff to understand whether aspects of a student’s chronic pain condition or medication could influence his/her school performance.

Physical functioning accommodations. Due to pain avoidance and deconditioning (Simons & Kaczynski, 2012), students with chronic pain often develop improper posture and body mechanics (i.e. use of body in movement). Students with chronic pain are encouraged to carry supplies in a lightweight backpack. It is often helpful to receive an additional set of books at home to reduce carrying weight throughout the day. In addition, students with chronic pain often struggle with managing efficient levels of energy throughout the day. To promote stamina and improved pacing throughout the day, students are recommended to periodically leave their seat, stretch, and use relaxation skills throughout the school day. These brief exercises may be particularly helpful to manage pain or discomfort during sedentary activities in a classroom. Scheduled breaks throughout the school day allow time for students to take their medications or adhere to other medical or emotional/behavioral needs. During these breaks, having trained school counselors designated to facilitate a student’s use of coping strategies may further benefit the student’s increased school attendance (Brown, 2006). It is important that school personnel understand any assistive devices or physical accommodations that the child will need throughout the day. School staff are often surprised that there are few assistive devices a child with chronic pain may actually need. Although the child may not need visible assistive devices, other accommodations may be necessary to transfer effectively between classes, such as extended transitions between classes or transferring at a separate time than a majority of students. Particularly during school activities that require more strenuous physical exertion, some students may need additional assistance with stairs and modified gym activities.

Psychological accommodations. Managing pain requires psychological intervention as much as physical intervention. Students need to feel validated about their current level of distress. It is important that staff do not question the students’ pain or expect the student to justify the extent of his/her suffering. Rather, staff should encourage the child to engage in normal activities and support the student’s gradual return to class and increased participation in classroom activities. It is important not to ask about the pain often, because students do much better with distraction (i.e. when their attention is diverted to topics other than pain). This is one reason school attendance and classroom activities can be so helpful to these children—active distraction from pain. These children also require significant praise for getting through the day. Chronic pain is considered an invisible illness—although students do not present with physical symptoms easily observed visually by others, they continually struggle to make it through classroom activities. It is incredibly beneficial when teachers acknowledge the progress the student is making, provide hope that they can reach their goals, and provide support to go one step further each week—again, recovery from chronic pain is a long term process.

Children often learn a number of cognitive and behavioral strategies to mitigate pain, increase functioning despite pain, and maintain a positive attitude to progress in daily activities. It is often helpful for students to share their skills with teachers, as teachers or counselors can support the use of the skills within the classroom and often provide some creative modifications of how to apply these in the classroom. Further, teachers should allow moments during the class period for the student to use relaxation skills or other coping skills to modify fatigue or stress, being especially sensitive to not draw attention to him/her when it is clear s/he is actively coping with pain while trying to remain in the classroom.

In addition, the student will benefit from a specific plan to manage stress and pain in school. A rescue protocol to manage urgent flairs in pain or stress helps the student feel supported and helps teachers understand the student’s immediate needs. However, it is necessary that this plan note how the child will successfully return to class following an acute episode.

Additionally, chronic pain often presents with comorbid anxiety and depression (Dorn et al., 2003; Wager et al., 2015; Eliacik et al., 2017). It is important that these diagnoses are clarified with school personnel and additional supports are provided (e.g. school counseling). Even if these comorbid conditions are not present, it is highly recommended that the student follow-up regularly with the school counselor/psychologist to revisit their accommodations and any related psychosocial concerns. Through active monitoring of accommodations and supports in place, as well as the student’s response, everyone involved can make any necessary modifications as well as praise the student for his or her progress to date.

Related to the student’s psychosocial functioning, other factors related to school avoidance or declining participation in class should be carefully reviewed. A recent study suggests students with chronic pain may present with undiagnosed ADHD, autism, or nonverbal learning disorders more often than peers (Low Kapalu et al., 2018)—and this can go unnoticed when teachers and medical providers alike focus on chronic pain. Bullying or social aggression is also a common daily hassle for students with chronic pain (Fales et al., 2018). If needed, the school should provide the necessary academic or social supports.

Academic accommodations. Children and adolescents with chronic pain often worry about make-up work due to decreased attendance from chronic pain episodes (Walker, 2004). To alleviate these worries, a timeline and schedule for making up schoolwork should be established during the child’s school re-entry process (Brown, 2006). If the child enrolls in a rehabilitation program that would interfere with regular school attendance, the school should be informed and plan for how best to support academic progress during intensive rehabilitation. Until the child can demonstrate physical participation in a full day of school, consider a modified school day. Afterwards, a child may still benefit from a late start (miss first period) to facilitate improved sleep hygiene and transition to school. Other accommodations may include preventing cognitive fatigue by scheduling a study hall or less demanding class after a cognitively demanding class, or allowing a rest period during class after 30 minutes. Students may also benefit from study periods during the school day to receive additional tutoring/instruction from the primary teacher to ensure comprehension of the material and the expectations for work.

Students may also benefit from environmental accommodations to ease school stress and facilitate pain management in school. Students can reduce sensitivity to the environment with preferential seating, reduced/modified screen time, or quieter places for lunch and study hall. Receiving copies of class notes can reduce visual, physical and cognitive fatigue from transcribing notes in class. If additional time is provided to transition between classes, this may be an ideal time for the student and teacher to consult on any missed or misunderstood instruction

Finally, teachers can make several accommodations to support academic promotion. It is best to have a direct conversation about what tasks need to be performed so the student can clearly graduate to the next grade level. This will reduce a lot of anticipatory academic stress. It is very helpful in the short term to eliminate any past due academic work which is not necessary to demonstrate comprehension/competency in an academic area and is not essential to earn course credit. Some programs have considered offering course credit for learning about pain and pain management (Reid et al., 2016). Other necessary coursework may be modified to reduce cognitive burden. This may include reducing number of items on homework, providing reports in oral discussion instead of written format, providing copies of classroom notes, and using scribes. Teachers should avoid penalizing the student for work turned in late due to prior assessment and management of chronic pain; however it is acceptable to create a new plan for accountability with the student. Importantly, to the best of everyone’s ability, it helps to set an expected date for academic recovery, such that the student can be caught up in a reasonable amount of time. Prolonged periods of feeling behind in school add stress and interfere with performance and physical/emotional functioning.

Monitor the plan

Students returning to school after prolonged absence often benefit from administrative check-ins at scheduled intervals during the first one to two months of returning to school. These brief check-ins may take 10-15 minutes, but can ensure the student understands the accommodations provided, utilizes supports in the school, and is making adequate progress in academics. As students progress, some accommodations may be removed to reinforce independent functioning and prevent inadvertently maintaining a sense of disability. One or two follow-ups with the rehabilitation or medical team can be a successful way to validate the student’s progress and reinforce further independent functioning at school.

For students needing formal accommodations, a Section 504 Plan or Individualized Educational Program (IEP) may be helpful to provide structure for the medical, physical, and academic accommodations that the student needs (https://kidshealth.org/en/parents/504-plans.html). More specifically, a Section 504 Plan refers to written plans for specific students with disabilities (i.e. chronic pain conditions) containing educational accommodations to assist them within an academic setting. An IEP on the other hand is fitting for students who require further customized instruction in their curriculum to accommodate their needs. These formal accommodations ensure the student with chronic pain is systematically receiving necessary support in school, and allows these accommodations to be monitored and assessed as the student continues to progress in school.

Conclusions

While schools dedicate their efforts to providing a supportive environment for every student’s learning, supporting students with chronic pain can be challenging due to significant school absences, an incomplete understanding of chronic pain, and a lack of team support for the student. Given the complexities involved, collaboration among all parties involved in the student’s care is essential for optimizing a successful school re-entry. Understanding all perspectives, practicing the shared philosophy of pain rehabilitation, and careful planning are necessary components for a successful school re-entry. School personnel may benefit from collaborating with the rehabilitation team and family and following these guidelines to decide which specific accommodations may benefit the student’s medical, physical, psychological, and academic functioning upon his/her school re-entry. The primary goals should be to increase the student’s school attendance, active participation, and academic recovery. This increased functioning is likely to subsequently influence positive improvements in pain reduction, mood, engagement with peers, and eventual academic success.

Cite as: Benore E, Fahrenkamp A, Zhakunets O, Banez G. School re-entry following chronic pain and disability: A pathway to success. Pediatric Pain Letter 2020;22(1):2-15. ppl.childpain.org

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