Supporting children with chronic pain in their return to school
Kailyn M. Jones, Sara King, and Jill E. MacLaren Chorney
Pediatric chronic pain is increasingly recognized as a highly prevalent health concern that affects children’s daily activities and quality of life (Palermo, 2000; Perquin et al., 2000; King et al., 2011). One daily activity that is often affected by chronic pain is school functioning, as children who experience pain tend to experience a number of challenges including decreased school attendance, disrupted social functioning, disrupted cognitive processes, and overall decreased academic performance (Logan et al., 2008; Dick & Pillai Riddell, 2010; Forgeron et al., 2010). Given that school attendance is the primary task of childhood (Harris, 2009), it is essential to ensure that children with chronic pain are able to meet the demands of the school environment. Although children with chronic pain face many challenges with respect to school success, the following commentary will focus specifically on school attendance and the challenges inherent in facilitating school integration and reintegration for these children. While we would suggest it is imperative for clinicians to recognize and address all of the challenges children with chronic pain face in relation to school (e.g. cognitive and social disruption), examining each of these challenges extensively is beyond the scope of this commentary.
Due to persistent pain and frequent medical appointments, children with chronic pain exhibit more frequent school absences than their healthy peers (Sato, 2007; Logan et al., 2008). Indeed, in a study involving adolescents with chronic pain, Logan et al. (2008) found that 44% of students with pain missed at least 25% of school days and 20% of students missed more than 50% of school days. Not only do these students miss valuable academic time, but they also miss other important aspects of the school experience such as developing independence, their identity, and social relationships with other children and adults (Geist et al., 2003). Further highlighting the critical importance of school attendance, Kearney (2001) suggests that prolonged school absenteeism is one of the most disruptive events in the healthy development of a child. As a result, it is important to consider ways in which children with chronic pain can be supported in their school attendance so that academic and other developmental goals can be achieved.
In a recent commentary, Boutilier and King (2013) discussed the silo approach commonly taken by education and health care systems to address the needs of children with chronic pain; that is, multiple systems often work independently of each other, meaning that the child’s needs are never completely addressed or met. The authors therefore suggest an interinstitutional approach to the management of chronic pain in which education and health care systems work collaboratively together. One method for increasing interinstitutional collaboration between school and health care systems is the use of a formal school reintegration program. In a systematic review of interventions to facilitate school reentry for children with chronic health conditions, Canter and Roberts (2012) found that school reintegration programs are effective at increasing illness-specific knowledge and generating positive attitudinal change in both teachers and peers. Improving knowledge and attitudes in teachers and peers enables them to more effectively support children with chronic health conditions making school attendance easier for them and, consequently, allowing them to reintegrate more successfully (Canter & Roberts, 2012). This review provides a summative indication that school reentry programs involving interinstitutional collaboration are an effective method for assisting children with chronic illnesses return to school following an extended or frequently occurring school absence.
School reintegration programs
In the late 1990s, the Leukemia Society of America identified the development and evaluation of school reintegration programs as a health priority (McCarthy et al., 1998). This resulted in the development of several school reintegration programs specific to pediatric cancer (e.g. Power et al., 2003; Harris, 2009). In his presidential address to the Society of Pediatric Psychology, Brown (2002) reiterated the importance of continued work on school reintegration programs and called for an expansion of these models to other chronic health conditions. Whereas much of the school reintegration literature continues to focus primarily on children with cancer, there has been some expansion of school reintegration programs to other health conditions such as pediatric organ transplant (e.g. Weil et al., 2006) and pediatric burns (e.g. Girolami, 2004).
In a review of currently published school reintegration programs for children with cancer, Prevatt and colleagues (2000) report that most school reintegration programs incorporate at least one of three components. First, school personnel workshops designed to increase knowledge about the specific health condition and ease anxiety about the child’s return to school. Depending on the needs of the individual student, these meetings/workshops could take place in a group setting or be targeted to individual school staff who work closely with the child and family. Second, peer education initiatives that aim to provide age-appropriate knowledge about the specific health condition and discuss questions/concerns peers may have through small group discussions and activities. Third, comprehensive models that involve collaboration between school personnel, health care personnel, and the child and family to develop a formal plan for the child’s return to school. In addition to this formal plan, comprehensive models also typically include school personnel workshops and peer education initiatives.
Harris (2009) indicates that the appointment of an individual to act as a consultant-liaison is a key component of a comprehensive and successful school reintegration plan. The consultant-liaison is informed about all the needs of the child and takes responsibility for communicating important information between the family, health care team, and school team. Harris (2009) suggests the consultant-liaison can assist in ongoing monitoring and implementation of the formal plan and/or other supports that have been recommended by school and health care teams. Recognizing the already overflowing role of both health care and school team members, Harris (2009) suggests the school psychologist as an appropriate professional to fill this role. Many psychologists who work in schools are knowledgeable about both health care and education systems, as well as the immediate school environment. They often also possess the necessary training in consultation skills to effectively liaise between the family, health care system, and school system. Psychologists working in schools with this expertise could be valuable assets in the school reintegration process. Prevatt and colleagues (2000) also support this role for school psychologists and suggest they can efficiently navigate and oversee the school reintegration process for children with chronic health conditions.
School reintegration programs and chronic pain
Currently, a universally accepted school reintegration program for children with chronic pain is not available. Anecdotally, however, many pediatric pain programs incorporate some school collaboration. Boutilier and King (2013) identified examples of pediatric pain programs that successfully incorporate a school reintegration or educational component into pain management protocols. For example, both the Chronic Pain Rehabilitation Program at the Lucile Packard Children’s Hospital in Palo Alto, California and the Pediatric Pain Rehabilitation Clinic at the Kennedy Krieger Institute in Baltimore, Maryland collaborate with schools to support their patients’ academic success. Additionally, both programs incorporate neuropsychological or psychoeducational assessments and interventions to ensure a smooth transition back to school. Cognitive behavioral interventions have also been used to target academic impairment and have shown to have positive effects on school attendance (Eccleston et al., 2009; Logan & Simons, 2010). In considering school reintegration for this population, cognitive behavioral strategies should certainly be considered and incorporated in relation to school reintegration.
In a discussion of return to school in children with recurrent abdominal pain (RAP), Walker (2004) identifies a number of common obstacles to school attendance and offers simple interventions that can be used to help children with RAP reintegrate to school following an absence. Walker (2004) highlights obstacles such as extensive make-up work, worry about providing explanations of their absence to teachers and peers, and fear of being unable to manage a pain episode at school. She recommends the use of interventions such as gradual reintroduction (e.g. returning for half of a school day then slowly increasing attendance to a full day) and the use of a behavior reinforcement program (e.g., star chart) to track and reward the child’s school attendance. The interinstitutional collaboration observed in the applied practice of the pediatric pain programs mentioned above along with Walker’s (2004) more concrete guidelines for supporting children with RAP can serve as important models for developing supports for children with chronic pain in their return to school.
Similar to the challenges identified by Walker (2004), clinicians often report difficulty making decisions about modified or reduced school schedules for children with chronic pain. On one hand the child may experience increased school success if the demands are kept at a more minimal expectation for the child. However, from a behavioral perspective, allowing escape/avoidance behavior around school attendance will not result in successful school reintegration. In considering school reintegration for children with chronic pain, difficult clinical decisions or dilemmas such as this one represent important areas that must be addressed by clinical research.
Generalizability of school reintegration programs
Prevatt et al. (2000) suggest school reintegration models developed for cancer are easily generalized to other illnesses; however, when considering this proposition, the unique features of chronic pain prompt careful consideration. For example, research shows that some school team members maintain false perceptions about chronic pain that, in some cases, require unique psychoeducation (Logan et al., 2007). Teachers may believe, for example, that a student is faking their pain to avoid school (Chibnall & Tait, 1999; Logan et al., 2007). Similar beliefs regarding the real nature of chronic pain may also need to be addressed among peers of children with chronic pain. In this case, the school reintegration program should incorporate specific education about the nature and experience of chronic pain for both peers and teachers. In a study about school personnel’s specific concerns about chronic pain, Logan & Curran (2005) identify that school personnel desire more education and communication regarding the specific needs of children with chronic pain indicating their potential openness to meetings/workshops. Additionally, chronic pain tends to produce a persistent unpredictable pattern of school absences and returns (Logan et al., 2008). A child may experience multiple absences associated with chronic pain over an extended period of time, resulting in the need for multiple school reintegration plans. Conversely, a child with cancer may experience a single extended school absence and then return to school illness-free, resulting in only one instance where school reintegration is necessary. In the case of the student with pain, the school reintegration program should be clear with respect to expectations regarding school attendance (e.g. full time regardless of pain or more flexible absences) and, if appropriate, determine how sporadic absences will be managed.
Although generalizing school reintegration programs developed for other illnesses such as cancer to chronic pain requires caution on the part of clinicians, families, and educators, they are an important potential intervention, as they serve as models to learn from in the development of a program specific to chronic pain. Walker’s (2004) guidelines for supporting children with RAP identify obstacles to school attendance that are addressed by school reintegration programs developed for other illness. For example, Walker (2004) suggests children worry about explaining their absence to teachers and peers; this concern would be addressed in the school personnel workshop and peer education initiative components of current school reintegration programs (Prevatt et al., 2000). This example illustrates how it is possible to modify and use existing school reintegration programs to support the school reintegration needs of children with chronic pain. Furthermore, existing programs provide a useful and somewhat inspirational example of how school and health care systems can collaborate effectively with one another to ensure the academic success of children interacting with both systems.
Future directions and recommendations
The development of school reintegration program guidelines for children with chronic pain would provide valuable guidance to clinicians, educators, and families. Whereas a set of school reintegration program guidelines for chronic pain could likely include a number of general recommendations, flexibility for individual differences and developmental considerations will also be important. Considering the variability of chronic pain, a specific school reintegration program will need to be flexible and allow for differences from student to student. Following the development of such a program, examination of its effectiveness will be necessary. This examination could occur through a randomized controlled trial or by using another equally rigorous method of comparison between the supports children currently receive in their return to school and the more formal application of support through a school reintegration program that incorporates the components described above. As previously mentioned, this commentary focused primarily on the school-related challenge of decreased school attendance. To ensure the child’s needs are fully met, consideration of additional school-related challenges such as disrupted social functioning and cognitive processes will be important in the development of such a program.
Furthermore, careful examination and consideration of the unique features of chronic pain (e.g. peer perception of faking pain) is imperative. For example, one future consideration related to peer involvement in the school reintegration process might be the implementation of a school-wide program that promotes and rewards peer inclusion, prosocial behavior, and healthy lifestyles more generally, as opposed to individual peer education sessions about chronic pain. A consideration such as this is informed by research examining whether disclosure and social-support seeking from peers might be harmful as opposed to helpful for children with chronic pain (e.g. see La Greca et al., 2002). Peer education provides only one of many examples of how unique features of chronic pain need to be considered in the development of a school reintegration program.
Following development of guidelines for school reintegration in children with chronic pain, it will be important to ensure that these guidelines are followed and that programming is implemented by appropriately trained personnel. Psychologists, nurses, and social workers who work in schools and who have adequate training in intervention may be an appropriate fit for this role and, consequently, could become an important part of school reintegration programs for children with chronic pain. These same professionals who also possess advanced research skills could contribute to the further development and monitoring of a chronic pain-specific school reintegration program.
Whereas we would like to offer concrete clinical guidelines for facilitating a positive return to school for children with chronic pain, we face the challenge of limited research in the areas of school-related support needs and school reintegration support strategies for this population. We agree that developing concrete guidelines for supporting this population in their return to school would be invaluable to the field and, as such, we recommend future research and development in this area. Our research team is currently examining adolescents’ return to school needs following major spinal surgery, with a view to developing both general and condition-specific guidelines for supporting return to school. In an attempt to offer applied recommendations for clinicians who are supporting children with chronic pain in their return to school, our research team has also included a case example highlighting a hypothetical school reintegration experience. We hope to highlight some of the critical considerations discussed throughout this commentary in the case example.
As the prevalence of pediatric chronic pain continues to affect children and, consequently, the family, education, and health care systems with which they interact, it is essential for these systems to work collaboratively with one another. School reintegration programs can serve as an important and effective tool to facilitate effective collaboration between these groups to ensure the most positive academic and social outcomes for children challenged by chronic pain.
Cite as: Jones KM, King S, MacLaren Chorney JE. Supporting children with chronic pain in their return to school. Pediatric Pain Letter 2014;16(1-2):8-14. www.childpain.org/ppl
Boutilier J, King S. Missed opportunities: school as an undervalued site for effective pain management. Pediatr Pain Lett 2013;15:9-15. Link
Brown RT. Society of pediatric psychology presidential address: toward a social ecology of pediatric psychology. J Pediatr Psychol 2002;27:191-201. PubMed Abstract
Canter KS, Roberts MC. A systematic and quantitative review of interventions to facilitate school reentry for children with chronic health conditions. J Pediatr Psychol 2012;37:1065-1075. PubMed Abstract
Chibnall JT, Tait RC. Social and medical influences on attributions and evaluations of chronic pain. Psychol Health 1999;14:719-729.
Dick BD, Pillai Riddell R. Cognitive and school functioning in children and adolescents with chronic pain: a critical review. Pain Res Manag 2010;15:238-244. PubMed Abstract
Eccleston C, Palermo TM, Williams AC, Lewandowski A, Morley S. Psychological therapies for the management of chronic and recurrent pain in children and adolescents. Cochrane Database Syst Rev 2009 Apr 15;(2):CD003968. PubMed Abstract
Forgeron PA, King S, Stinson JN, McGrath PJ, MacDonald AJ, Chambers CT. Social functioning and peer relationships in children and adolescents with chronic pain: a systematic review. Pain Res Manag 2010;15:27-41. PubMed Abstract
Geist R, Grdisa V, Otley A. Psychosocial issues in the child with chronic conditions. Best Prac Res Clin Gastroenterol 2003;17:141-152. PubMed Abstract
Girolami PA. The impact of a school reentry program on the psychosocial adjustment of children with burn injuries. West Virginia University, Morgantown, WV, Doctoral dissertation, 2004. Link
Harris MS. School reintegration for children and adolescents with cancer: the role of school psychologists. Psychol Sch 2009;46:579-592.
Kearney CA. School refusal behavior in youth: a functional approach to assessment and treatment. Washington, DC: American Psychological Association, 2001. Link
King S, Chambers CT, Huguet A, MacNevin RC, McGrath PJ, Parker L, et al. The epidemiology of chronic pain in children and adolescents revisited: a systematic review. Pain 2011;152:2729-2738. PubMed Abstract
La Greca AM, Bearman KJ, Moore H. Peer relations of youth with pediatric conditions and health risks: promoting social support and healthy lifestyles. J Dev Behav Pediatr 2002;23:271-280. PubMed Abstract
Logan DE, Coakley RM, Scharff L. Teachers’ perceptions of and responses to adolescents with chronic pain syndromes. J Pediatr Psychol 2007;32:139-149. PubMed Abstract
Logan DE, Curran JA. Adolescent chronic pain problems in the school setting: exploring the experiences and beliefs of selected school personnel through focus group methodology. J Adolesc Health 2005;37:281-288. PubMed Abstract
Logan DE, Simons LE. Development of a group intervention to improve school functioning in adolescents with chronic pain and depressive symptoms: a study of feasibility and preliminary efficacy. J Pediatr Psychol 2010;35:823-836. PubMed Abstract
Logan DE, Simons LE, Stein MJ, Chastain L. School impairment in adolescents with chronic pain. J Pain 2008;9:407-416. PubMed Abstract
McCarthy AM, Williams J, Plumer C. Evaluation of a school re-entry nursing intervention for children with cancer. J Pediatr Oncol Nurs 1998;15:143-152. PubMed Abstract
Palermo, TM. Impact of recurrent and chronic pain on child and family daily function: a critical review of the literature. J Dev Behav Pediatr 2000;21:58-69. PubMed Abstract
Perquin CW, Hazebroek-Kampschreur AA, Hunfeld JA, Bohnen AM, van Suijlekom-Smit LW, Passchier J, et al. Pain in children and adolescents: a common experience. Pain 2000;87:51-58. PubMed Abstract
Power TJ, DuPaul GJ, Shapiro ES, Kazak AE. Promoting children’s health: integrating school, family, and community. New York: Guilford, 2003. Link
Prevatt FF, Heffer RW, Lowe PA. A review of school reintegration programs for children with cancer. J Sch Psychol 2000;38:447-467.
Sato AF, Hainsworth KR, Khan KA, Ladwig RJ, Weisman SJ, Davies WH. School absenteeism in pediatric chronic pain: identifying lessons learned from general school absenteeism literature. Child Healthcare 2007;36:355-372.
Walker LS. Helping children with recurrent abdominal pain return to school. Pediatr Ann 2004;33:128-136.
Weil CM, Rodgers S, Rubovits S. School re-entry of the pediatric heart transplant recipient. Pediatr Transplant 2006;10:928-933. PubMed Abstract