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Continuing professional development
Fundamentals of chronic pain in
children and young people. Part 2
NCYP498 Forgeron PA, Stinson J (2014) Fundamentals of chronic pain in children
and young people. Part 2. Nursing Children and Young People. 26, 9, 31-36.
Date of submission: January 9 2014. Date of acceptance: June 4 2014.
Correspondence
Abstract
[email protected]
Chronic pain is common in childhood and can have severe physical and psychological consequences but, unlike
acute pain, it is not always recognised by nurses and other health professionals. A holistic and multidisciplinary
approach to treatment is required and nurses can play a significant role in helping children and families to
cope with the negative effects of the condition. The first part of this article, published in October, looked at the
prevalence, anatomy and physiology of pain, and factors associated with chronic pain and its consequences.
In part 2, assessment strategies as well as pharmacological and psychological interventions, are discussed,
along with self-help programmes and strategies that can be used to aid sleep and help the child
at school manage their pain.
Aims and intended learning outcomes
This article aims to provide an evidenced-informed
review of the fundamental nursing care practices when
working with children and young people experiencing
chronic pain and their families. After completing the
article and time out activities you will be able to:
■ Outline assessment of chronic pain in children and
understand the range of self-report measures.
■ Summarise the various treatment strategies that
comprise a multimodal approach to managing
children’s chronic pain.
■ Discuss the nursing care associated with managing
a child or young person who has chronic pain.
Treatment
Once treatable physical causes for the child or young
person with chronic pain have been eliminated,
most children and parents need and are willing to
accept an explanation that the recurrent or persistent
pain has a physiologic basis that can be aggravated by
stress and worry. This information helps prevent and/or
reduce the continued search for a cause of the pain
(von Baeyer 2006), and helps children and parents
engage in treatment. The goal of treatment is to decrease
pain and, more importantly, to reduce the pain-related
disability to maximise function and improve quality
of life. This approach includes specific treatments to
NURSING CHILDREN AND YOUNG PEOPLE
target possible underlying pain mechanisms, as well as
symptom-focused management to address pain, anxiety,
depressive mood and sleep disturbances.
Given the goals of treatment, interdisciplinary team
approaches to chronic pain management are most
effective because these teams include professionals with
the necessary expertise to target the multiple ways a
child or young person’s life can be disrupted by chronic
pain (Eccleston et al 2003, Singh et al 2004). However,
this does not mean that an interdisciplinary specialist
team must consult and manage all young people with
chronic pain. Primary care practitioners can manage
many of these young patients, collaborating with other
experts and involving services such as community
psychologists, physiotherapists and school nurses.
One of the first things nurses can do to help a child
or young person with chronic pain is to acknowledge
that they are experiencing pain. Children and parents
frequently have a sense of responsibility for the pain,
which is exacerbated by clinicians and others who
may insinuate that it is not real, especially if there is
no known cause. Children and parents are told that
the pain is psychogenic – originating from the mind –
and frequently report that healthcare professionals tell
them their pain is ‘all in your head’.
This, however, is inaccurate. As described in part 1 of
this article, published in October’s Nursing Children and
Paula A Forgeron is assistant
professor, school of nursing,
University of Ottawa, Canada
Jennifer Stinson is Mary
Jo Haddad nursing chair in
child health, Peter Lougheed
CIHR new investigator
scientist, Child Health
Evaluative Sciences,
and nurse practitioner,
Chronic Pain Program,
Hospital for Sick Children,
and associate professor,
Lawrence S Bloomberg,
faculty of nursing, University
of Toronto, Canada
Conflict of interest
None declared
Keywords
Adolescence, child, children’s
nursing, chronic diseases,
chronic pain, humans,
paediatrics, pain, pain relief
This article has been
subject to open peer
review and checked using
antiplagiarism software
Author guidelines
rcnpublishing.com/r/
ncyp-author-guidelines
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Continuing professional development
Young People, pain without an identified cause can occur
due to the plasticity of the central nervous system, which
results in changes in the body’s pain processing.
Now do time out 1.
Time out
1
Pain scales
Name or compile a list of the pain scales that
you use in your practice or have read about
as part of an education course.
Assessment
Assessment is the foundation of pain management.
Chronic pain assessment builds on components of
acute pain assessment – location, frequency, onset,
duration, variability, exacerbating and alleviating factors,
and intensity – but requires additional assessment from
a holistic perspective and begins with a complete
medical and pain history. Validated self-report measures
such as the Pieces of Hurt tool (Hester 1979), Faces
Pain Scale-Revised (Hicks et al 2001), and visual
analogue scales (Scott et al 1977) have been
recommended for use with children to capture pain
intensity (Stinson et al 2006).
To understand patterns of a child’s pain and identify
potential triggers, it is also important to track their pain
experience over time. This can be accomplished by
using prospective pain diaries that the child or parents
complete to capture the number of pain-free days,
lowest pain intensity, most severe pain, average pain and
activities during the day.
Daily pain diaries rely less on recall and provide
a more accurate picture of the pattern of a child’s pain
(McGrath et al 2008). Electronic diaries have also been
developed that include alerts and alarms to remind
children to complete the diary in real time, helping
decrease recall bias (Stinson et al 2007). One such
diary is the Pain Squad smartphone app for young
people with persistent and recurrent pain due to cancer,
developed with the Hospital for Sick Children in Toronto
(Stinson et al 2013).
In addition to the pain, it is necessary to assess
a child and young person’s physical, emotional health,
social functioning and quality of sleep. There is a range
of multidimensional pain tools to capture information
about these components. The Bath Adolescent
Pain Questionnaire (Eccleston et al 2005) is a
multidimensional self-report measure that provides
an overview of the effects of chronic pain on various
functional domains: social, psychological and
physical. This measure is helpful because it offers
an overview, and the subscales can highlight areas
of function requiring more detailed assessment,
such as depression and anxiety.
Measures used to assess the effectiveness of
pharmacological, physical and psychological strategies
to manage pain have been recommended by the
Pediatric Initiative on Methods, Measurement and Pain
Assessment in Clinical Trials. (McGrath et al 2008).
The measures reviewed and suggested for use in
children’s pain research trials (see McGrath et al 2008)
Table 1 Overview of interventions for treating chronic pain in children and young people
Pharmacological
interventions
Physical interventions
Psychological
interventions
School/social interventions
■ Non-steroidal
anti-inflammatory
drugs and paracetamol.
■ Opioid analgesics.
■ Anticonvulsants.
■ Antidepressants.
■ Anxiolytics.
■ Nerve blocks.
■ Exercise, including
yoga.
■ Thermal stimulation:
heat, cold,
desensitisation.
■ Physiotherapy.
■ Occupational therapy.
■ Massage.
■ Acupuncture.
■ Education about
pain experience
and pain problem.
■ Sleep hygiene.
■ Relaxation.
■ Biofeedback.
■ Behaviour therapies.
■ Cognitive therapies.
■ Cognitive behaviour
therapy.
■ Acceptance and
commitment therapy.
■ Mindfulness therapy.
■ Family therapies.
■ Psychotherapy.
■ Decreased
school workload,
with a gradual increase
in workload as pain
management improves.
■ Extended timeline for
school project(s).
■ Physical
accommodation: seating,
use of a lift, permission
to stand and stretch.
■ Permission to participate
in extracurricular
activities despite
absentee record.
■ Encourage to contact
friends.
(Adapted from Stinson and Reid 2013)
32 November 2014 | Volume 26 | Number 9
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are not only psychometrically sound, but lend themselves
for use in the clinical area and have normative data
for comparison. Therefore, reliable and valid measures
are available to help nurses carry out holistic pain
assessment with young patients.
Schooling is a major aspect of social role functioning
that is negatively affected by chronic pain and requires
assessment. Most children with pain conditions
frequently miss school and their pain will also interfere
with their ability to sustain the necessary focus and
concentration to study (Logan et al 2008, Dick and
Pillai Riddell 2010). It is important to assess the
amount of schooling that is missed, as well as the
changes in school performance and perceived barriers
to academic success. Nurses can use this information
to advocate for schools to take these issues into account
and help a child with chronic pain remain in school or
return to school.
Assessment strategies to capture baseline data should
be used for reassessment, and the data can also provide
a benchmark to determine approaches to ongoing
treatments. It is helpful for all children with pain,
and their parents, to know that the treatment approach
is rehabilitation and that improvements in chronic
pain conditions will be seen gradually over weeks and
months, rather than days.
Interventions
Table 1 provides an overview of the pharmacological,
physical, and psychosocial and school strategies
that can be used to help children with chronic pain.
It offers a summary of interventions based on the
domain of treatment.
Pharmacological interventions Seldom are
interventional techniques, such as regional anaesthesia,
used in managing chronic pain in children because
there is no strong evidence to support their effectiveness
(Perez et al 2010). Most medications for chronic pain
are administered orally, so patients do not need to be
in hospital. The World Health Organization’s (WHO)
analgesic ladder provides a framework for administering
medications to alleviate pain. The same general
principles can be used for children and young people
with chronic pain, although there is limited research
to support their use in young patients (WHO 2012,
Zernikow et al 2012).
The type of analgesia administered is linked to the
type of pain. Paracetamol – known as acetaminophen
in Canada, the US and Japan – and/or non-steroidal
anti-inflammatory drugs (NSAIDS) are recommended
for mild to moderate pain, and opioids for moderate to
severe pain. When adding a medication from another
class, it is advisable to continue the previous medication
– such as paracetamol or a NSAID, with the addition of
NURSING CHILDREN AND YOUNG PEOPLE
an opioid – as the medications from each class alleviate
pain differently.
Adjuvant medications are those whose primary
classification is not analgesics, but that have a role in
treating specific types of pain. Anticonvulsants and tricyclic
antidepressants are effective for various types of chronic
pain (such as neuropathic) and are used frequently to
treat children’s chronic pain. Medications from these
two classes may be given on their own or in combination,
depending on the type of pain. Other medications have
also been used to alleviate complex pain – for example,
ketamine and lidocaine – but these must be ordered and
administered cautiously by trained professionals.
In children and young people, long-term opioid use
is generally ineffective, but may be appropriate in some
chronic pain conditions, especially during pain crisis
– such as sickle cell disease – and for those who have
significant improvement in function with opioids. Recent
recommendations are for clinicians to develop a contract
with patients who are on opioids (see British Pain
Society 2010). The Canadian Centre for Effective Practice
(2011) has an Opioid Manager webpage that provides
guidelines for trialing a course of opioids for non-cancer
chronic pain and examples of opioid contracts.
Physical interventions The fear-avoidance model
predicts that continued participation in activities valued
by children and young people with chronic pain, despite
some level of pain, should decrease disability and
depression (Asmundson et al 2012). Nevertheless,
chronic pain often leads children to avoid physical
activities due to fear of a recurring injury or because
it exacerbates the pain. Lack of muscle use can lead
to loss of muscle strength, flexibility, endurance and
overall deconditioning. Physical therapy, therefore,
is an integral component of chronic pain management
and is the cornerstone of treatment in certain types of
pain conditions (for example, complex regional pain
syndrome) (Engel and O’Rourke 2006).
Physiotherapy is generally provided on an outpatient
basis, with the goal of teaching and supporting the
child to continue the activity programme at home.
Graded physical exercise is an approach that provides
children or young people with chronic pain with
systematic and gradual exposure to the activity and
helps reduce their fears. Activity pacing is another
approach that can help children learn to balance periods
of activity and inactivity in an attempt to keep their
physical activity at optimum level.
One study has outlined the benefits of yoga.
Young people with irritable bowel syndrome (n=25)
who participated in yoga reported less functional
disability and wanted to continue practising yoga
(Kuttner et al 2006). Clinical trials suggest that
Iyengar yoga (yoga using props for support and
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Continuing professional development
Psychological interventions Cognitive strategies
(how someone thinks about their pain), behavioural
strategies (how one behaves in response to their pain),
and approaches that include a combination of cognitive
and behavioural strategies are examples of psychological
interventions. Pain education, relaxation, negative
thought stopping, guided imagery and distraction are
examples of psychological approaches.
Evidence is mounting that psychological interventions
can be self-administered without a psychologist or nurse
being present by way of the internet, using specifically
designed websites with online modules (text, pictures,
embedded video) to learn and practice psychological
strategies (Stinson et al 2009, Palermo et al 2010)
or CD-ROMs (Connelly et al 2006).
Now do time out 2.
School and social interventions Pain intensity
and duration are not the best predictors of poor
school function (Logan et al 2008), so strategies
that target pain-related disability and improve coping
also help improve school attendance. However,
some specific school-related accommodations have
been shown to improve school function and will vary
depending on the individual’s needs (for example,
increase time to complete projects and tasks, tutoring,
decreases in work load, permission to use elevators,
different seating).
Children and young people may need to be reassured
that requesting school accommodations will not
34 November 2014 | Volume 26 | Number 9
2
Time out
individualising poses to one’s medical condition)
may be beneficial for patients with chronic pain
(Evans et al 2012). The advantage of an activity
such as yoga is that it may help change a young
person’s view from needing treatment to incorporating
activity as a healthy lifestyle. However, despite
recognition of the importance of physical treatment
for children with chronic pain, research documenting
the benefits of physical approaches is limited
(Campos et al 2011).
When suggesting activities to the young patient, it is
important that they be of interest to them and that they
can maintain proper body mechanics while participating
in the activity. To gain any benefit, there needs to be
a minimum of two 20-minutes sessions a week on
non-consecutive days. In the case of deconditioned
patients, these 20-minute sessions should be split
into two 10-minute sessions over the day (Wittink and
Takken 2008). Re-engaging or maintaining regular
exercise (20 minutes three times a week, for example)
also helps with other areas of function disrupted by
pain, such as sleep, mood, self-esteem and energy
levels (McCarthy et al 2003, Engel and O’Rourke 2006,
Stinson and Reid 2013).
School-related strategies
View this website to learn more
school-related strategies for children
and young people with chronic pain
(Boston Children’s Hospital, tinyurl.com/
bch-chronic-pain). In your experience, would
these school accommodations have been
helpful to a child or young person whose
chronic pain kept them from school?
Are there other school accommodations
you would recommend?
negatively affect their ongoing academic aspirations.
In fact, research suggests that these accommodations
have been helpful in increasing self-efficacy in school,
and teachers rated students with more accommodations
as better adjusted to school compared with typical peers
(Logan et al 2008).
Teachers and school officials often request contact
with clinicians when trying to accommodate the care
needs of a child or young person with chronic pain in
school (Logan and Curran 2005). School nurses are
important in educating other school staff about chronic
pain and its treatment, and they dispel myths about
chronic pain and explain the rationale behind any school
accommodations requested on behalf of the child.
School is also a significant social context for
children, and the peer relationships of pupils with
chronic pain may be affected negatively. Nurses
need to be mindful that no causal relationship has
been shown between peer relationship or friendship
difficulties and chronic pain (Forgeron et al 2010).
It is possible that children who have medical
conditions, such as pain, may be viewed as more
vulnerable and may be the target of bullying as opposed
to the pain developing as a reaction to being bullied.
To counter the social interference that chronic pain
can have on school attendance it is helpful to allow
students to attend and participate in school-related
social activities, such as dances, field trips and clubs,
even when the students are not in school full time.
This helps decrease social isolation and strengthens
connectedness with the school.
Sleep hygiene (good sleep habits) Sleep disturbances
are common in children with chronic pain (Palermo
and Kiska 2005), including increased insomnia and
more night-time awakenings compared with healthy
adolescents (Palermo et al 2007). Insufficient sleep can
have negative effects in the daytime, such as irritability,
being more easily upset, and decreased concentration at
school. These can undermine the coping skills necessary
for effective pain management. Nurses can teach
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Complementary interventions There is little research
on alternative treatments for children and young people
with chronic pain. Therefore, these strategies must be
used with caution. Research is emerging in relation to
acupuncture as an alternative treatment, which may
be effective for alleviating pain (Kemper et al 2000).
However, not all children and young people are willing to
try it, especially those with needle fears and phobias.
Parents and young people need to be aware that
substances marketed as natural may contain active
ingredients that cause adverse reactions and may
interact negatively with prescribed medications.
Nurses need to create an atmosphere in which parents
and young people are comfortable discussing their use,
so safety issues can be addressed. Additionally, nurses
need to provide young people with privacy during an
assessment so they can freely discuss substances
misuse, such as recreational drugs and alcohol, because
this also poses safety implications.
Now do time out 3.
3
Time out
children, young people and parents strategies to improve
sleep hygiene, that include:
■ Regular bed times and awakening times, regardless
of sleep during the night.
■ Avoiding the use of electronic devices in the child’s
or young person’s bedroom in general but especially
at night (no mobile phones, laptops or other
electronic devices), and permitting only short naps
(20 minutes or less) during the day.
Chronic pain services
Do a quick web search of the healthcare
services in your area for children and
young people with chronic pain. Where
are the referral centres in the UK? Do they
offer a self-management programme?
Do they offer continuing education
resources for clinicians?
Where would you send a family with a
child or young person with chronic pain for
help? If you had to work with a child with
chronic pain what treatment strategies would
you be able to provide?
References
Asmundson GJG et al (2012) Pediatric
fear-avoidance model of chronic pain:
foundation, application, and future
directions. Pain Research and Management.
17, 6, 397-405.
Berde CB, Solodiuk J (2003) Multidisciplinary
programs for management of acute and
chronic pain in children. In Schechter
et al (Eds) Pain in Infants, Children and
Adolescents. Lippincott Williams and Wilkins,
Baltimore MD.
British Pain Society (2010) Opioids for
Persistent Pain: Good Practice. BPS, London.
www.britishpainsociety.org/book_opioid-main.
pdf (Last accessed: October 9 2014.)
Campos A et al (2011) Clinical impact and
evidence base for physiotherapy in treating
childhood chronic pain. Physiotherapy Canada.
63, 1, 21-23.
Centre for Effective Practice (2011) The Opioid
Manager. tinyurl.com/cep-opioid-manager
(Last accessed: October 3 2014.)
Connelly M et al (2006) Headstrong: a pilot
study of a CD-ROM intervention for recurrent
pediatric headache. Journal of Pediatric
Psychology. 31, 7, 737-747.
Dick BD, Pillai Riddell R (2010) Cognitive and
school functioning in children and adolescents
with chronic pain: a critical review. Pain
Research and Management. 15, 4, 238-244.
Eccleston C et al (2003) Chronic pain in
adolescents: evaluation of a programme
of interdisciplinary cognitive behaviour
therapy. Archives of Disease in Childhood.
88, 10, 881-885.
Eccleston C et al (2005) Managing chronic
pain in children: the challenge of delivering
chronic care in a ‘modernising’ health care
system. Archives of Disease in Childhood.
90, 4, 332-333.
NURSING CHILDREN AND YOUNG PEOPLE
Kemper KJ et al (2000) On pins and needles?
Pediatric pain patient’s experience with
acupuncture. Pediatrics. 105, 4pt2, 941-947.
Engel JM, O’Rouke DA (2006) Chronic
pain in children, physical medicine and
rehabilitation. In Schmidt RF, Willis WD
(Eds) Encyclopaedia Reference of Pain.
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Evans S et al (2012) Yoga for youth in pain:
the UCLA pediatric pain program model.
Journal of Holistic Nursing. 26, 5, 262-271.
Kuttner L et al (2006) A randomized trial
of yoga for adolescents with irritable bowel
syndrome. Pain Research and Management.
11, 4, 217-224.
Forgeron PA et al (2010) Social functioning and
peer relationships in children and adolescents
with chronic pain: a systematic review. Pain
Research & Management. 15, 1, 27-41.
Logan DE, Curran JA (2005) Adolescent pain
problems in the school setting: Exploring the
experiences and beliefs of selected school
personnel through focus group methodology.
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Hester NK (1979) The preoperational child’s
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November 2014 | Volume 26 | Number 9 35
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Continuing professional development
Conclusion
Evidence on the prevalence of chronic pain in children
and young people has been growing in the past
15-20 years and may not yet be integrated fully in
children’s nursing or other healthcare professionals’
curricula. Nurses and other healthcare clinicians need to
recognise that chronic pain is a real condition requiring a
range of interventions to target not only pain but also the
consequences of pain-related disability.
Now do time out 4.
4
Time out
Self-management Although some forms of chronic
pain can be cured, in many cases it requires long-term
management. Chronic pain provision typically includes
outpatient services, however, some centres offer inpatient,
day or residential treatment programmes focusing on
self-management (Berde and Solodiuk 2003, Eccleston
et al 2003, Logan and Simons 2010). Self-management
programmes for young people with chronic pain are
designed to help them gain the knowledge and skills they
need to manage the condition. The strategies involve
many of those discussed here, but with a focus on the
individual mastering the suggested approaches and
therefore helping to improve self-efficacy.
Reflective account
Now that you have finished the article you
might like to complete the questionnaire
on page 38. You can also write a reflective
account of between 750 and 1,000 words.
Go to the Nursing Children and Young People
website, at rcnpublishing.com/r/ncypreflective-account, to find out more.
References
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McCarthy CF et al (2003) Physical therapy
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NL et al (Eds) Pain in Infants, Children and
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McGrath PJ et al (2008) Core outcome
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36 November 2014 | Volume 26 | Number 9
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for use in clinical trials in children and
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