The purpose of this project is to develop an effective teaching tool to facilitate communication among medical providers, students and families, and school administration on how to best meet the complex needs of students with chronic pediatric headache as they transition back to school after an extended medical absence.
In recent decades, the number of children with chronic illnesses transitioning back to school has increased (Kliebenstein & Broome, 2000). Though medical professionals provide much of the necessary physical and psychological care to facilitate school reentry, the process may be delayed for several weeks to months. Of the approximately 20% of all children suffering from a chronic illness, about one-third of that number experiences consequences severe enough to interfere with school functioning and performance (Kaffenberger, 2006). Chronic pediatric headache, including diagnoses of new daily persistent headache, tension-type headache, and chronic migraine, is becoming an increasingly prevalent pain condition in children and adolescents. One study reported that 15% of the pediatric patients presenting to neurology clinics at Royal Manchester, Booth Hall, and Birmingham Children's Hospitals were diagnosed with daily headaches (Viswanathan, Bridges, Whitehouse, & Newton, 1998), while a US-based study cited pediatric migraine as one of the five most prevalent childhood disorders in the US, affecting up to 10% of children and 28% of adolescents (Split & Neuman, 1999). Chronic headache is often associated with significant impairment of daily functioning, including difficulty with school performance and attendance (Hershey & Winner, 2007) and higher rates of school absenteeism than children with other chronic illnesses (Powers et al., 2006). As Freudenberg and Ruglis (2007) note the intricate connection between good health and education, minimizing school drop-out rates for children with pain conditions such as chronic pediatric headache has evolved beyond individual patient care towards a global public health issue.
Chronic headache patients seen at the Pediatric Headache Program at Boston Children’s Hospital meet with an integrated team of psychologists, neurologists, nurse practitioners, and nurses who provide comprehensive care during initial and follow-up evaluations. At initial assessment, patients report missing an average of 8.73 days of school per three months; at follow-up evaluation, the number drops to 5.06 absent days (McDonald, 2010). While many of the patients’ school attendance and disability improve between initial and follow-up appointment in utilizing this multidisciplinary approach to chronic pain management, addressing the patients’ medical and psychological needs is the beginning of rehabilitation. Successful school reintegration and academic performance for patients with prolonged absenteeism due to headache pain mark the primary objectives of medical professionals, school administration, and the families of children and adolescents suffering with chronic pain conditions. School nurses are key players in this process, as they are the daily medical contact for these patients, are psychologically and culturally knowledgeable regarding the needs of this age group, and work consistently with the academic staff.
Per review of questionnaires completed by patients attending the Pediatric Headache Program at Boston Children’s Hospital, as well as school nurses in the greater Boston area, the Pediatric Headache Program has developed a two-armed study addressing the necessity, implementation, and efficacy of an educational tool designed for school nurses in supporting the complex needs of chronic pain patients reentering school. Phase I of the study surveyed a total of 73 child and adolescent patients and their parent(s) and school nurses in 6 Massachusetts districts presenting to or involved with the Pediatric Headache Program. Questionnaire items address the specific actions, support skills, and knowledge-base of school nurses caring for the physical and psychological needs of students with chronic pediatric headache conditions. When asking patients about their actions at the onset of headache pain, 37.6% reported visiting the school nurse, 21.1% took prescribed or over-the-counter medications, 33.0% ignored the pain, and 8.3% texted or called their parents. In asking the school nurses to report which actions are most helpful when headache and migraine sufferers report to their offices, 27.3% checked “providing snacks and drinks,” 18.2% reported “providing over-the-counter medications,” and 9.1% indicated “allowing time for a nap.” Regarding emotional support provided by school nurses during acute pain, 49.2% of patients and their families reported feeling “very” supported by their school nurses. However, when questioning whether the patients and families perceived their school nurse to be knowledgeable about their chronic headache condition, 16.4% reported “not at all knowledgeable” and 29.5% reported “somewhat knowledgeable.”
While nurses possess varying degrees of knowledge and experience in dealing with chronic pediatric headache conditions, school nurses should be provided with an educational tool and checklist to ensure proper medical services are being offered to these unique students. This tool, currently being developed by the nurses, neurologists, psychologists, and clinical support staff at the Pediatric Headache Program, include specific suggestions regarding atmosphere (environment), hydration, relaxation techniques, stress and anxiety management, and over-the-counter medication available in the nursing office, as well as information on sleep, medication overuse and rebound headaches, and the interplay of headaches and social, family, and financial stressors. When asking school nurses whether they would be interested in access to such a tool, 66.7% of the nurses responded “yes.”
Phase II of the study (in progress) will focus on the efficacy of the tool from the perspectives of the school nurses, patients, and families. Through the development and implementation of an educational tool available to school nurses, this study seeks to bridge the gap between medical and psychological care provided at chronic pain centers (like the Pediatric Headache Program) and successful reintegration into school for chronic pediatric headache patients. Though this project is being developed at a pediatric headache center in the northeast United States, this tool may also be globally applicable to patients with non-headache chronic pain.
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