Helpful Resources for Schools
Chronic Pain in Children & Teens
Chronic pain is pain that persists for more than three months and often years beyond the expected time to heal from injury, surgery, or onset of a painful condition. It occurs in one in five adults and is significant cause of suffering and disability worldwide. Although mainly a disease of adults it does occur in children and teenagers. It is an extremely complex condition that can lead to detrimental effects on physical, developmental and social wellbeing. It is a considerable problem with slightly more than one child/teenager in every twenty reporting chronic pain issues.
A survey of over 5,000 children aged 0 – 18 years in the Netherlands reported that 25% had experienced some form of chronic or recurrent pain (Perquin et al, 2000). A Spanish study, of 561 school children aged 8 – 16 years, reported that 5% suffer moderate or severe chronic pain (Huguet & Miró, 2008). In a Canadian study of 495 schoolchildren aged 9 - 13, more than half reported having experienced at least one recurrent pain (headache, stomach pain or 'growing pains'). Although 46% of this population reported a 'long-lasting' pain the authors classified 6% as having chronic pain (van Dijk et al, 2006). A US study found that 13% of 12-13 year-olds and 17% of 15-16 year-olds experience abdominal pain every week (Hyams et al, 1996). A Statistics Canada health report identifies chronic pain among 2.4% of males and 5.9% of females aged 12 to 17 years (Ramage-Morin & Gilmour, 2010). Therefore, It is likely that a teacher will have one student in each classroom with ongoing pain that impacts daily functional activities.
Typical types of chronic pain seen in children and teenagers include headaches, recurrent abdominal pain, limb pains, musculoskeletal pains, and Complex Regional pain Syndrome (CRPS). Abdominal pain is significantly more likely to be reported by girls and limb pain (or growing pains/muscle aches) is significantly more likely to be reported by boys (Perquin et al, 2000; van Dijk et a, 2006; Coffelt et al 2013). It has been reported that girls are three times more likely to report chronic pain than boys (Martin et al, 2007; Perquin et al., 2000) also showed a significant increase in the prevalence of chronic pain in girls aged between 12 and 14. Sex difference is partially dependant on sex hormones but other potential mechanisms include social and psychological processes. (Fillingim et al, 2009; Traub and Ji 2013).
Children living in lower educated, lower income families are at greater risk of recurrent pain (Grøholt et al, 2003). Pre-existing chronic pain in the family environment is a predictor of both physical and psychological effects on the child (Lynch et al, 2006). Twin studies, suggest the role of genetics in a shared biological sensitivity, referred to as pain vulnerability, pain sensitivity, or central sensitivity syndrome (Kindler LL, et al. 2011, Mayer EA, et al. 2009, von Baeyer CL, et al. 2011, Williams FM, et al. 2010). Culture, ethnicity and area of residence also affect prevalence rates, for example, in Canada, the incidence of chronic pain is higher among Aboriginal people and in males living in rural areas (Ramage-Morin & Gilmour, 2010; Mailis-Gagnon et al, 2007).
Chronic Pain Pathophysiology
The pathophysiology of chronic pain is different to acute pain (such as after injury or surgery) and is managed differently. Chronic pain is diagnosed when the medical history, physical examination and subsequent investigations have ruled out a significant medical cause for the pain. Chronic pain is a consequence of neuro-inflammatory activity and its interaction with the complex peripheral and central nervous information-processing network. It is not a simple hardwired impulse to sensation messaging system. There is basic science evidence that shows that the nervous system responds and changes to its inputs and messages. This is known as neuroplastic change and it is occurring in chronic pain. Fortunately, neuroplastic change is reversible with early intervention and practiced gradual return to normal function .
There are a number of risk factors that can contribute to the development, maintenance and worsening of chronic pain in children/teens:
- Physical stressors (competitive sports, recurrent stress fracture, injury, illness)
- School stressors (exams, workload, peer pressure, bullying)
- Unrecognized learning disability, need for challenge or a mixed profile.
- Life stresses and mental health issues (anxiety, sadness, depression, family turmoil, PTSD, social phobia)
- Sudden change in physical activity (decreased endorphins, decreased self-confidence and self-image).
School has an impact as one of the emotional stressors playing a role in the development and maintenance of chronic pain. Therapy to resolve chronic pain issues requires that all the factors that played a part in precipitating or maintaining pain are addressed. This requires that the school based team and the healthcare team assess each individual child/teen for any school issues and address their educational needs in partnership with the child/teen and their family. This will ultimately make it easier to restore these children/teens back to normal functioning and life.
Impacts of Chronic Pain
Some children with severe chronic pain embark on a downhill spiral of decreased physical, psychological and social functioning (Forgeron et al 2010). This includes loss of mobility with inability to participate in physical or sporting activities, poor sleep, impaired memory, difficulty concentrating on school work, school absenteeism, social isolation and family stress. As chronic pain persists the child can experience increased pain intensity, distress, sadness, anxiety and depression. Sometimes people, including some family members, teachers and peers, do not believe the student is in pain because they cannot see an obvious sign of injury (pain is invisible). This has a tremendously negative impact on a students psychological wellbeing. Students with chronic pain will have good days and bad days for no clear reason and sometimes this also makes others question the validity of their pain.
Chronic pain can affect a Student’s participation in P.E. and physical activity at school. Challenges may include:
- Reduced activity tolerance and fitness level, making full participation difficult
- Difficulty keeping up with peers,
- Feeling pressure to participate above their activity tolerance level,
- Not wanting to be perceived as “faking” or “lazy” to avoid exercise.
When a child/teenager is entangled in the disordered lifestyle associated with chronic pain the child and their family require coordinated integrated care to affect a recovery. The multidisciplinary team management approach, based on pharmacology, physiotherapy and psychology, is now well established to be the standard of care for children with chronic pain. Multidisciplinary treatment goals are targeted to individual children/teenagers after careful consideration of the medical history, pain history, examination and relevant investigations. How each therapeutic modality of care is balanced is dependant on the individual child and takes into consideration the type and duration of pain, as well as the impact of pain on particular biopsychosocial aspects of the child’s life. This involves looking beyond a child’s pathology in isolation and engages multiple specialists to optimize the child/teenager’s psychological and emotional wellbeing, physical functioning and return to schooling.
The downward spiral, as described, can be prevented (or at least minimized) with proper support from their school, family and healthcare team working collaboratively. Chronic pain rehabilitation focuses on getting back to schooling, physical activity, and returning to normal life. Over time, chronic pain can resolve once the rehabilitation plan is in place and implemented. Young people with chronic pain may need a variety of academic and activity-based adaptations to be able to reach their full potential academically, to function fully, and to develop as healthy children and teenagers.
How to Help a Student with Chronic Pain
An understanding and accommodating school can play a key role in helping a student with chronic pain minimize the devastating impacts of pain, and continue to grow, learn, move and stay connected with friends. Pacing and accommodation strategies will go a long way to re-engaging students with chronic pain, helping them build their fitness levels, increase their activity tolerance and re-engage with school academic and social activities. The quicker the school can take action, in partnership with the student, their family, and the healthcare team, the more likely the student will be able to return to living a “normal” life. Strategies for paced academic and physical activities as well as individualized adaptations are outlined below.
What is Pacing ?
Pacing is the underpinning of the rehabilitative approach to chronic pain management. It is a systematic progression of exercise/activity, starting slow and lo and progressively increasing to a SMART (Specific/Measurable/Attainable/Relevant/Time Bound) goal. It involves a balance between activity and rest. Pacing is taught as an “art” that gets implemented into daily life, across multiple contexts (activity, school, home, social). There is a learning process and it takes practice. Pacing requires active participation from the child/teen. They first determine their tolerance level (Tolerance = The amount of time one can do an activity before it exacerbates pain). Tolerance is used to find a starting point for pacing activities. The starting point is the baseline (Baseline = 50% of tolerance). The practice of pacing involves the following six steps:
- Choose a pacing activity
- Determine tolerance
- Find the baseline
- Plan steady increased progression to the SMART goal
- Manage setbacks
- Record progress
Pacing in P.E
- modify activities to allow for pacing,
- allow regular rest breaks,
- design an alternate activity that is more do-able for the student,
- grade the student on effort/participation, rather than performance.
- Typical pattern of physical activity over time for someone with complex pain
- Tend to do more on a good day and less on bad days
- May be “over-active” on a good day and “pay for it” later, causing them to be inactive for a period of time
- Eventually leads to decreased activity tolerance over time
- Shows the initial phase of pacing – try to find a more consistent level of activity
- Set baseline level that can be performed on both good and bad days that doesn’t exacerbate symptoms
- Avoid “overactivity-underactivity” cycle
- Gradual step-wise increases
Pacing in the classroom
In addition to being active in P.E., school can also present other physical challenges for a student with chronic pain. Possible strategies include:
- positioning/seating adaptations in the classroom,
- stand and stretch breaks,
- providing a separate set of textbooks for home and school,
- allow extra time between classes,
- elevator access,
- provide a separate room for pain management/rest breaks.
Academic Pacing: Type of Schooling, Amount of Schooling & Adaptations
If a student in unable to tolerate a regular school program, there are alternates. The right program may turn out to be a custom combination of the following:
- regular school program
- homebound teacher
- distance learning.
Additionally, it can be worth thinking outside the box to find the right amount of schooling for a student:
- full- time or part-time?
- reduced course load?
- spare block?
- homework thinning?
- delayed graduation?
It is helpful for children and teens with chronic pain and their parents to approach the school principal and/or counsellor about exploring adaptations that will help them to achieve to their full potential academically, despite pain.
Adaptations that can be helpful include:
- Flexible assessment criteria- extra time, separate room for exams
- Thinning of assignments
- Deadline extension
- Break down assignments/mini deadlines
- Peer- buddy for notes/catch-up
- Teacher lecture notes
- Part-time or alternate schooling
- Homebound instruction
- Occupational Therapist (OT) consultation/assessment
- Special Education Technology British Columbia (SET-BC)
- Educational Assistant/Resource Block
- School and /or community counselor
- Separate space in the school for rest/pain management
- Social support (clubs, skills groups)
It can be extremely helpful to have adaptations implemented on a more formalized basis so that they do not have to be redeveloped and explained each year. For this, the school-based team will need to review the student’s unique needs (possibly with a formal psycho-educational assessment) and develop an Individualized Education Plan (IEP).
In some cases (e.g. extra time on provincial exams), there may also be a need for submission by the school to the school board for consideration of designation under “chronic health impairment”. For this, a letter documenting the impact that pain has on the student’s functioning and learning will need to be submitted by the healthcare team to the school to put forward an application. When pain resolves, all adaptations can gradually be weaned and ultimately stopped.