Learning Objectives: After participating in this professional development activity, the provider should be better able to:
1. Identify challenges school nurses face when supporting children and adolescents with chronic pain.
2. Describe at least 2 ways clinicians can support school nurses in the treatment of students with chronic pain.
3. Explain at least 2 future research considerations to better the support for children with chronic pain in the school environment.
The prevalence of chronic pain among children and adolescents ranges between 11% and 38%,1 and often presents as headache and abdominal pain. Chronic pain is defined as pain persisting beyond 3 months, marked by a hypersensitive pain system, and is associated with diagnostic uncertainty due to the "invisibility" of symptoms.2
Biopsychosocial conceptualizations of chronic pain emphasize the importance of biological, psychological, and social factors on the etiology of pain symptoms and behavior.3,4 Chronic pain is understood as a dynamic integration of biological processes, psychological factors, and sociocultural variables, all considered within a developmental framework in children.5 During these formative years, youth with chronic pain can develop anxiety and depression,6 poor quality of life, impairment in school functioning,7 and social isolation.8
Chronic pain is a barrier to success in school. Compared with healthy peers, children with chronic pain report significantly more social anxiety and poorer school performance.9,10 Children with chronic pain problems are also 5 times more likely to miss school regularly than children without pain and have more absences than children with other chronic illnesses.11,12 As a result, children with chronic pain often visit the school nurse more frequently as compared with others, including adolescents with juvenile idiopathic arthritis and healthy peers.12
School nurses are often the front line of support for children and adolescents with chronic pain and can be influential in implementing treatment plans within school settings; yet little is known about the knowledge and attitudes of school nurses in their approach to treating youth with chronic pain. School nurses are essential in the academic success of children with medical illnesses. Most high school students (89.32%) report accessing the school nurse or clinic during the school year, and 65.56% report receiving at least 1 treatment from the nurse (eg, medication or ice) at school.13 Studies on medication management practices have demonstrated that most school nurses (69.9%) administered medication.14 This resource is necessary for students with chronic health conditions who often receive medications and require medical accommodations in academic environments. School nurses can also be a liaison to other school staff (ie, administrators and teachers) for help in understanding the diagnosis and treatment of students with chronic illnesses. However, adolescents with chronic pain report experiencing disbelief among school nurses and a lack of support.15 The invisibility of symptoms and diagnostic uncertainty for youth with chronic pain contributes to others not believing their pain, known as pain-related stigma15; thus, they may conceal symptoms to avoid negative judgments from others.16
Diagnostic uncertainty plays a role in the difficulties school nurses experience when working with children with chronic pain. The limited research evaluating pain-related stigma among school nurses has resulted in mixed findings. A qualitative study of school nurses from Norway revealed that the absence of medical etiology to explain the pain symptoms was challenging in identifying ways to support these students,17 but generally, the nurses shared that their pain symptoms should be taken seriously. Not all research supports that school nurses do take students' pain seriously. A survey study conducted in the United States demonstrated that 47.1% of 140 school nurses believed children who reported chronic abdominal pain were faking or seeking attention.18 What is clear in the literature is the lack of education and training on pediatric chronic pain for school nurses, which interferes with their ability to support these youth.17-19
The difficulties school nurses face caring for children with chronic pain may be reflected in the school environment at large. Research on schoolteachers working with students with chronic pain has demonstrated more supportive responses toward students with documented medical etiology of their pain compared with those without.20 A recent study demonstrated that teachers might hold stigmatizing beliefs toward students with chronic pain.21 Teachers' supportive responses have also been demonstrated to buffer against school absences in a sample of male school-aged children with chronic pain.22 Therefore, the support within school environments, particularly school nurses, for students with chronic pain is salient to functional recovery.
The research regarding how school nurses manage students with chronic pain is limited. The purpose of this current exploratory study was to evaluate the knowledge and attitudes of school nurses regarding youth with chronic pain and provide recommendations on ways to support youth with chronic pain in school environments.
Although the study is descriptive, we developed the following hypotheses: (1) The majority of school nurses have limited training on managing chronic pain and, (2) as evidenced by previous research,18 at least 40% of nurses perceive that students with chronic pain fabricate their symptoms.
Methods
We conducted a cross-sectional survey study of school nurses in Connecticut. The current study was approved by the Institutional Review Board (IRB) at Connecticut Children's Medical Center. We received permission to post the survey on the Connecticut Nurses Department of Education website for school nurses to complete if they visited the website. The survey also was sent via email through a Connecticut Department of Education school nursing listserv. The inclusion criterion for the study was any nurse who currently worked within a school system in Connecticut. Informed consent was waived by the IRB due to the anonymity of the responses. Participants were informed that the survey was part of a research study via an informational page before the start of the survey.
Measures
The Chronic Pain Attitudes and Knowledge (CPAK) survey is a 23-item questionnaire adapted from the Pediatric Nurses' Knowledge and Attitudes Regarding Pain Survey23 and other studies evaluating the knowledge of pediatric chronic pain populations.19 In the CPAK survey, 15 questions focus on experience with students with chronic pain (eg, "How frequently do students with chronic pain seek your service at school?") and other training experiences (eg, "Have you received any extra training in working with patients with chronic pain conditions?"). Eight questions focus on attitudes toward students with chronic pain (eg, "In your opinion, in what percentage of your students with chronic pain do you believe the pain has a psychological, psychiatric, or behavioral basis?").
The survey also includes 4 questions to gather demographic information. These questions consist of sex, school level (elementary, middle, or high school), years of experience, and school location in Connecticut.
Data Analysis
Descriptive statistics and frequency analyses were used to describe the chronic pain experience, training background, and attitudes of school nurses from the corresponding survey questions.
Results
Participants included 31 school nurses from across the state of Connecticut. Of the 31 respondents, 25 fully completed the survey. Even partially completed surveys were included in the data. The demographic characteristics of participants are shown in Table 1.
Experience and Training in Treating Chronic Pain
The majority of participants reported that they worked with students with chronic pain every day, a few times a week, or weekly (55.2%) and identified approximately 1 to 5 students with chronic pain seeking nursing services (65.5%). Participants reported headaches (63%) as the most common chronic pain symptom. Regarding time constraints, 72% either were neutral or agreed with the statement that "students with chronic pain take up a lot of time during the school day." Regarding their level of comfort with treating students with chronic pain, the majority of participants indicated they were "somewhat" (46.2%) or "very" (30.8%) comfortable treating them. Further details about school nurse experience with treating chronic pain in school are displayed in Table 2.
Most participants endorsed not receiving any extra training in the treatment of chronic pain conditions (84%) and wanting more knowledge about chronic pain treatment (88%). Regarding the optimal management of chronic pain, the majority of respondents strongly disagreed (84%) with "the best way to treat chronic pain is to send the student home." However, when asked about transcutaneous electrical nerve stimulation unit treatment, a common intervention for chronic pain, 76% of respondents indicated low levels of comfort with this intervention.
School-based accommodations through a mandated Section 504 plan are an important component of chronic pain treatment in youth. Section 504 of the Rehabilitation Act of 1973 protects the rights of students with disabilities to participate in educational programs that receive federal funding. In the United States, medical providers submit 504 accommodations that allow children and adolescents with chronic illnesses access to the necessary resources to be successful in the learning environment. However, 76% of the respondents reported that students rarely have 504 plans for chronic pain within their schools. When asked about the effectiveness of 504 plans, 64% indicated they agreed with them being helpful. But, 88% responded that they were "not at all" to "somewhat" supported by outside medical and mental health providers working with students with chronic pain.
The survey included 4 true or false questions to evaluate the chronic pain knowledge of participants. The majority of participants answered all 4 questions correctly (87.5%).
Chronic Pain Attitudes
A large number of school nurses in our survey had negative attitudes toward students with chronic pain, and 44.0% of our sample reported they were either neutral or agreed with the statement, "I believe that students with chronic pain fake their symptoms to get out of school and/or course work."
Additionally, our findings suggest that the majority of our sample of school nurses (88%) believed that some percentage of students with chronic pain overreport their pain symptoms. Moreover, 96% of school nurses endorsed that pain symptoms were due to an underlying psychological, psychiatric, or behavioral disorder. More detailed information about school nurse chronic pain attitude data is shown in Figure 1.
Discussion
The findings of the current study support the need for additional chronic pain training for school nurses who provide clinical care for children and adolescents. The disparity between the high frequency of contact with students with chronic pain and discomfort in treating these studies is substantial, further justifying the need to address this clinical gap. Identifying these gaps and finding ways for school nurses to improve their support for students with chronic pain is particularly salient because children and adolescents spend the majority of their day within the academic setting, and promoting functioning throughout the day is pivotal in chronic pain treatment. Thus, it is imperative to equip school nurses with the appropriate tools to help support these students with whom they interact consistently.13
The findings of this exploratory study supported our expectation that chronic pain education is needed within school settings, consistent with the literature.17 The majority of our school nurse sample reported a low level of comfort in working with students with chronic pain and a lack of focused pain education, which is also a reaction shared by school psychologists.24 For individual providers to be trained in the specialty of chronic pain, it requires extraordinary efforts to gain the knowledge needed to treat this population.
Research in 2011 revealed that medical programs in North America incorporated less than 5 hours of chronic pain coursework into their medical school training, resulting in many physicians feeling inadequate to treat this population if they have not sought out additional training in anesthesiology or pain medicine.25 The need for adequate chronic pain knowledge is even more salient in the COVID-19 era, as these symptoms are present in children with long-haul COVID-19 infection.26 Thus, it is not surprising that school psychologists and school nurses would experience a strong level of trepidation, due to a lack of training, when attempting to support their students with chronic pain. (See Editor's Note on page 8 of this issue: Pediatricians Face Challenges in Diagnosing Post-COVID-19 Conditions.)
The findings of the study need to be considered in the context of its limitations. The online survey was posted on a school nurse website and sent through a listserv to recruit a convenience sample. Although the sample size was small, participants represented a range of experiences and training in the management of chronic pain within school environments. Due to the descriptive nature of the study, we did not seek to validate the survey. Future research should continue to conduct needs assessments among school nurses with larger sample sizes. The purpose of this study was to provide a foundation for clinical recommendations, with the goal of providing the necessary resources to school nurses who can better manage youth with chronic pain in the school setting.
Clinical Implications
Clinicians who work with youth with chronic pain, including medical providers, pediatric psychologists, pediatric nurses, physical therapists, and occupational therapists, can play an important role in helping school nurses care for students with chronic pain.
We suggest several areas where clinicians with chronic pain expertise can support their pediatric patients in the school environment, with the top 3 strategies being:
1. Providing education for school nurses
2. Developing school-based pain management plans
3. Engaging in regular communication with school nurses
We give further detail next for each of these strategies.
Providing Education for School Nurses
One of the barriers nurses face in managing chronic pain in school settings is the lack of training and knowledge about chronic pain. In addition to education needs, our findings support the need for increasing awareness among school nurses about potential stigma toward students with chronic pain. Pain-related stigma occurs when an individual negatively judges, criticizes, or disbelieves the individual with chronic pain.27 Similar to previous studies18 and our predictions, the majority of our sample did believe that students with chronic pain were faking their symptoms or overreporting their pain, or that chronic pain symptoms were due to an underlying psychiatric, psychological, or behavioral disorder.
Our findings align with qualitative studies of school nurses that demonstrate a common misperception that pain is largely a result of psychosocial factors.17 Placing an emphasis on psychosocial factors in chronic pain conceptualization and treatment underappreciates the biopsychosocial context necessary for chronic pain treatment and may lead to pain-related stigma.27,28 These perceptions can lead to less help and support from school nurses for students with chronic pain.
In reviewing the literature, however, there are avenues to help improve chronic pain support among school providers. Educational programs that target chronic pain assessment practices for school nurses have been developed and evaluated for effectiveness.29,30 These programs have demonstrated positive outcomes for students with chronic pain, particularly in addressing the knowledge gap about chronic pain and its treatment. Strategies of these educational programs included continuing education courses and/or fact sheets that support the implementation of chronic pain interventions within the school setting. Increasing the foundational knowledge of chronic pain is an important area of interventional focus, especially because there is hesitancy among even experienced school nurses on ways to implement new pain management practices in schools.30 However, once school nurse hesitancy is reduced and confidence is built, care for children and adolescents has been demonstrated to improve.
One study focused on teaching school nurses case management skills that contributed to a positive impact on a child's individual health program.31 Through this training, the quality of life for students with chronic illnesses improved as their school nurses increased engagement in case management activities. The researchers also identified that school nurses were able to improve communication with the caregivers of their students, when previous communications were minimal at best, as exemplified in an increased number of returned phone calls. It seems that once school nurses are given the tools to understand and implement adaptive treatment strategies for their students with chronic illnesses, they feel equipped to then advocate among all necessary health providers.31
Developing working alliances between medical providers and school district leadership is also vital in increasing buy-in for resource allocation to address this knowledge gap. Fostering collaboration between the 2 systems would also enhance the multimodal approach essential in the care of children and adolescents with chronic pain. One focus group study interviewed middle and high school personnel, including teachers, administrators, and nurses. This study highlighted the difficulties school personnel faced when working with adolescents with chronic pain, including several barriers from a systemic perspective in providing accommodations due to school resources and policies, such as working within the attendance requirements, class instruction needs, budget considerations, and school layout, all of which can affect the feasibility of accommodations such as an extra set of books or use of an elevator key.28
Another barrier to adequate chronic pain education for school nurses is the lack of funding for professional development training. As chronic pain conditions are one of many chronic illnesses students experience throughout each school district, the justification to support educational programs specific to chronic pain may not be fully supported by school leadership. However, if districts were to formalize policies to help their students with chronic medical conditions, funding for specialized training would likely follow. For example, in a nationally represented sample of public school districts, 67.4% of districts offered funding for nurses to address the gap in chronic health regarding asthma and diabetes training only after school-based health services policies were also implemented.32
Clinicians with expertise in chronic pain can be influential in closing the knowledge gap regarding chronic pain in young populations and potentially reducing stigma. Although a structured education program, as referenced previously, is ideal, some clinicians may face systemic and resource barriers to implementing these types of interventions. To aid in educating school nurses on managing youth with chronic pain on a more feasible scale, medical providers can engage in presentations at their local school districts. Not only can didactics provide knowledge about chronic pain, but community engagement and awareness of pediatric chronic pain treatment can elicit future chronic pain referrals and lead to students having access to appropriate care. Additionally, medical providers can provide handouts and resources.
The International Association for the Study of Pain has freely available electronic resources, including fact sheets and toolkits, on its website (http://iasp-pain.org) that can be shared with school nurses. Additionally, the Pediatric Pain Letter is a free, multidisciplinary online resource (http://childpain.org) that publishes information about research and clinical practice around the care of youth with chronic pain. Developing a library of electronic resources that can be easily disseminated to school nurses may be influential in reducing confusion about the legitimacy of the chronic pain diagnosis for students with chronic pain.
Developing School-Based Pain Management Plans
Medical providers are critical in providing medical recommendations for children and adolescents with chronic pain. For students with chronic pain, these accommodations may include extra time on assignments, reduced workload requirements, visits to the school nurse to rest (with expectations of returning to class), and psychological support. These recommendations reflect the goal of chronic pain treatment to foster continued engagement in functional activities. Allowing students to learn how to balance coursework completion while using adaptive pain management skills helps support the self-management needed for chronic pain treatment. This approach also helps decrease underlying subjective stress levels for these students who cannot keep up with the standard educational expectations. Thus, it is important that the gap between medical recommendations and the school implementation of these recommendations be minimal.
Specific medical recommendations would allow children and adolescents with chronic pain the best possible chance of success in school because such recommendations help school nurses understand these students' needs and provide tools to support their academic success. The majority of school nurses in our study (76%) indicated that many of the students with chronic pain in their schools did not have Section 504 accommodations. This finding is consistent with previous research that demonstrated the need for more guidance from medical providers to school personnel, even if Section 504 plans exist for students with chronic pain.28 When accommodations are in place, research has demonstrated that adolescents with chronic pain experience lower attendance rates and greater pain interference.7 Due to the low rate of school accommodations for youth with chronic pain, it is possible that only students with more severe chronic pain receive Section 504 accommodations. More information is needed to identify the barriers to providing medical accommodations for every child with chronic pain.
One of the most significant aspects of a Section 504 plan is to verify that a student has a medical diagnosis from a medical provider and is in need of accommodations within the school environment. Without the medical diagnosis and associated recommendations, school nurses are at a disadvantage for knowing how to best support their students with chronic pain. Future research should focus on increasing the availability of 504 plans and medical provider access, thereby helping to improve care coordination efforts. A possible barrier may be the diagnostic uncertainty faced by pediatric providers without chronic pain expertise.33 Identification of barriers to Section 504 accommodations for these students with chronic pain is crucial to improve nursing support in school.
Engaging in Regular Communication With School Nurses
One study demonstrated that parents perceived that provider and school communication was limited. In a sample of more than 18,000 children and adolescents, only 23.5% of parents indicated any care coordination between medical providers and school personnel in supporting their child with a chronic medical condition.34 Our findings similarly supported the notion of little to no collaboration with clinicians treating the student with chronic pain. As previously mentioned, building a strong working alliance with school nurses is essential in improving the care given to students with chronic pain in school environments.
Barriers to communication should be taken into consideration, as limited time and resources for school nurses and medical providers do exist in supporting the treatment of children and adolescents with chronic pain. Medical providers do not typically have protected time or receive reimbursement when collaborating with schools, limiting their ability to be influential in advocating for and supporting the child's medical needs within the school environment. It also places undue hardship on caregivers to be the middle person between the medical professional and school to ensure communication of recommendations, which possess its own challenges and vulnerability to inaccuracies.35 Providing chronic pain presentations in the school setting may be an avenue to increase education; however, structural changes specific to protecting time for both school nurses and medical providers to collaborate may be key in improving collaboration. For example, insurance reimbursement for school collaboration may encourage institutional change, paving the way for more medical provider engagement in regular communication with school nurses.
Conclusion
Our review indicates that there are many areas where education and increased support at many levels can improve management of pain in young people and also provide much-needed support for school nurses. Students with chronic pain have many challenges in school attendance and academic performance. A multimodal treatment approach is the gold standard for functioning in the context of chronic pain.
School nurses can be great allies in the successful implementation of these treatment plans. Still, our research demonstrates that limited knowledge and resources, lack of understanding, and inadequate care-coordination efforts between the medical and school systems are barriers to the ability of school nurses to help. Continued efforts are warranted, especially efforts to overcome these obstacles and to advocate for change in these practices within educational environments.
References