How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge

Abstract

Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.

Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).

Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.

Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.

Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.

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African Journal of Disability
ISSN: (Online) 2226-7220, (Print) 2223-9170
Page 1 of 13 Original Research
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Authors:
Ensa Johnson1
Stefan Nilsson2,3
Margareta Adolfsson1,4,5
Aliaons:
1Centre for Augmentave and
Alternave Communicaon,
Facul ty of H umanie s,
University of Pretoria, Pretoria,
South Africa
2Children, Health, Intervenon,
Learning and Development
(CHILD), Jönköping University,
Jönköping, Sweden
3Instute of Health and Care
Sciences, University of
Gothenburg, Gothenburg,
Sweden
4School of Educaon and
Communicaon, Jönköping
University, Jönköping, Sweden
5Swedish Instute of
Disability Research,
Jönköping University,
Jönköping, Sweden
Corresponding author:
Ensa Johnson,
ensa.johnson@up.ac.za
Dates:
Received: 19 Sept. 2018
Accepted: 19 Sept. 2019
Published: 22 Nov. 2019
How to cite this arcle:
Johnson, E., Nilsson, S. &
Adolfsson, M., 2019, ‘How
pain management for children
with cerebral palsy in South
African schools complies with
up-to-date knowledge’,
African Journal of Disability
8(0), a575. hps://doi.
org/10.4102/ajod.v8i0.575
Introducon
For children with disability, it is essential to provide current and evidence-based interventions to
ensure best treatment. Professionals may find it difficult to keep up to date with the latest
developments in cerebral palsy (CP) intervention because of the substantial increase of systematic
reviews published on CP intervention in the last decade (Anttila et al. 2008; Donald et al. 2014;
Novak et al. 2013; Reedman, Boyd & Sakzewski 2017; Thomason & Graham 2014; Wiart, Darrah
& Kembhavi 2008). Novak and her Australian colleagues reported on the state of evidence for
interventions to specifically support children with CP (Novak 2014; Novak et al. 2013). Even
though the results of Novak’s comprehensive systematic review were questioned by some
Australian experts as these experts were of the opinion that the majority of the studies included
in the review seemed to be sponsored by industry (Thomason & Graham 2014), it is important to
consider effective evidence-based CP interventions apart from surgery. In school settings, pain
management could contribute to children with CP’s optimal learning opportunities and
participation in classroom activities. This study, which is part of a larger project that aims to
facilitate discussions about best practices (Adolfsson, Johnson & Nilsson 2018; Johnson, Nilsson
& Adolfsson 2015; Nilsson, Johnson & Adolfsson 2016), explores how professionals working in
South African schools for children with special educational needs perceive pain management
intervention for children with CP, and how their ideas about interventions comply with knowledge
about evidence-based interventions as reported by Novak et al. (2013).
Copyright: © 2019. The Author(s). Licensee: AOSIS. This work is licensed under the Creave Commons Aribuon License.
Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal
problems that can influence learning in a school setting. Best pain management is essential for
these children, but school staff may not keep up to date with the latest developments and
interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with
contemporary scientific knowledge about effective evidence-based interventions.
Objectives: This study investigated how pain management intervention for children with CP
in South African schools complied with international scientific knowledge about evidence-
based interventions. The intention was to provide support for an update of knowledge on both
individual level (i.e. professionals) and system level (i.e. decision makers).
Method: Five focus groups were conducted with staff members at five schools for children
with special educational needs in South Africa. Manifest and latent content analyses of
professional statements identified interventions reported as beneficial and related them to
higher and lower levels of intervention evidence as reported at the time of data collection.
Results: Most treatment strategies concerned motor functioning that fell within the framework
of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited,
waiting times were long and medication for spasticity treatment was not offered.
Conclusion: A discrepancy between published evidence and clinical practice for pain
management in children with CP in South African school settings was noted. Suggestions for
improved early intervention to identify children’s hips at risk through surveillance
programmes; and orthopaedic management are proposed to prevent deformities and
unnecessary suffering in South African children with CP.
Keywords: evidence-based practice; intervention; clinicians; children with cerebral palsy; pain
management.
How pain management for children with
cerebral palsy in South African schools complies
with up-to-date knowledge
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Page 2 of 13 Original Research
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Pain in cerebral palsy
Cerebral palsy includes a group of permanent disorders of
the development of movement and posture (Rosenbaum,
Paneth & Leviton 2007) that could limit persons with CP to
participate in activities of daily living (such as eating,
sleeping and walking), physical activities (such as gross and
fine motor activities), communication, learning and social
engagement (Breau 2011; Johnson et al. 2015; Lauruschkus
et al. 2017). In addition to individual factors, environmental
factors may further impact the independence of a child living
with CP, such as physical accessibility, lack of assistive
materials or support networks (Novak et al. 2013).
The focus of this article will be on the classification of chronic
nociceptive musculoskeletal pain according to the
International Classification of Diseases 11th Revision (ICD-
11; World Health Organization 2019). Chronic nociceptive
musculoskeletal pain is often under-recognised even though
it is the most common comorbidity in children with CP
(Novak 2014; Westbom, Rimstedt & Nordmark 2017). Causes
of pain may be multi-factorial and could be attributed to
spasticity (occurring in 75% of children with CP), contractures
(in 80% of children with CP) and/or inability to walk (in 33%
of children with CP) (Novak 2014). Children with spasticity
are largely at risk of contractures. Contractures may lead to
hip displacement and further progress into painful hip
dislocation. Hip dislocation means that the femoral head is
completely displaced laterally out of the acetabulum
(Hägglund et al. 2016). Displacement and/or dislocation of
the hip is a major hindrance for children with CP. It is present
in one out of three children with CP, manifesting itself from 2
to 3 years of age (Huser, Mo & Hosseinzadeh 2018; Novak
et al. 2013). Children with bilateral involvement who cannot
walk have the highest risk of hip displacement or dislocation.
In severe cases, a windswept syndrome may occur, sometimes
combined with scoliosis (Hägglund et al. 2016). The
windswept hip deformity usually starts from the lower
extremities with abduction and external rotation of one hip,
with the opposite hip in adduction and internal rotation
(Hägglund et al. 2016). Windswept syndrome is difficult to
treat and could affect a child’s ability to stand or make sitting
and any lying down uncomfortable.
Pain management
Research in recent years has proven that prevention
approaches could manage a child’s pain and other
comorbidities, such as hip displacement, epilepsy or sleep
disorders, as well as lessen the development of contractures
that could worsen the child’s health outcome (Donald et al.
2014; Hägglund et al. 2014). One means of prevention is to
systematically follow-up the health status of children with
CP, with a focus on the hip displacement and muscle
contractures. Systematic hip surveillances have been created
by orthopaedic surgeons in collaboration with therapists and
used successfully in, for example, Nordic countries, Scotland
and Australia (Hägglund et al. 2014; Wynter et al. 2014).
However, no such systematic management process or
preventive pharmacological treatment is available in South
Africa (Donald et al. 2014; Nilsson et al. 2016).
Intervenon strategies in South
African school sengs
In recent studies, professionals (teachers and therapists)
working with children with CP in school settings in South
Africa and Sweden were asked about the intervention
strategies they used to manage the children’s recurrent pain
in school settings (Adolfsson et al. 2018; Johnson et al. 2015;
Nilsson et al. 2016). The professionals in the said studies
reported on a variety of intervention strategies. Subsequently,
action-and-reaction approaches followed by healthcare
professionals during pain management were identified
(Adolfsson et al. 2018). Action refers to strategies professionals
use to prevent pain, while reaction refers to professionals’
strategies to intervene when a child is already experiencing
pain. A difference was noted between strategies employed
by South African and Swedish professionals, as a reaction
approach was more commonly used in South Africa
(Adolfsson et al. 2018). Reasons for this finding could be that
the Swedish health professionals (who are typically
consultants in school settings) had access to interventions to
prevent children’s pain. Such interventions are a systematic
follow-up surveillance programme for children with CP –
also referred to as the Cerebral Palsy follow-Up Programme
(CPUP) (Degerstedt, Wiklund & Enberg 2017), as well as
pharmacological pain management strategies, for example,
botulinum toxin (BoNT) and baclofen intended for the
reduction of spasticity and recurrent pain (Hägglund et al.
2014). In contrast, in South Africa, pain management
strategies are based on traditional analgesics, that is,
paracetamol and non-steroidal anti-inflammatory agents.
These drugs are mostly used for acute pain (Wren et al. 2019).
In the South African schools where the study was conducted,
teachers or nurses sometimes only offered children a glass of
water as an alternative to pain medication (Adolfsson et al.
2018; Nilsson et al. 2016). Possible explanations for strategies
used by South Africa professionals working in school settings
are (1) legislation stipulating that only doctors can prescribe
pharmacological treatment, (2) caregivers (e.g. participants
in the said study) avoiding analgesics because of potential
side effects, (3) medical doctors and orthopaedic surgeons
who are only available outside school settings and (4)
patients (e.g. children with CP) who have to wait very long
periods to get appointments with specialists in public
hospitals (Nilsson et al. 2016).
In comparison with Swedish healthcare professionals, the
school-based South African health professionals were able to
provide ‘hands-on’ or immediate pain management when a
child experienced pain. These action–reaction approach
differences may also be the reason why there is a higher
incidence of children with severely affected CP (Gross Motor
Function Classification System [GMFCS] levels IV and V)
reported in Africa compared to those in European countries
(such as Sweden) and North America (Donald et al. 2014,
2015). Nevertheless, one previous study in this project

Page 3 of 13 Original Research
hp://www.ajod.org Open Access
(Adolfsson et al. 2018) found that the South African
participants valued other action interventions implemented
globally to support the well-being of children with CP. They
suggested additional resources needed to secure a satisfactory
pain management intervention for these children.
State of the evidence of intervenons
for children with cerebral palsy
A comprehensive systematic meta-review was conducted by
Novak et al. (2013) to obtain current knowledge about the
best available published intervention evidence for children
with CP. Data in the current study have been sorted and
analysed based on the results and recommendations by
Novak (2014) and Novak et al. (2013).
Intervenons by outcome
Novak et al. (2013) reported intervention options for 10
categories of outcomes. Only three of the categories that
focused on pain management were considered relevant for
the current study (1) spasticity management, (2) contracture
management and (3) improved motor activities and function
(see Appendix 1). The other seven categories mentioned by
Novak et al. (2013) that were not within the scope of this
manuscript included mealtime management, improved
muscle strength, self-care, communication, behaviour and
social skills, parent coping and bone density.
Evidence of intervenons
Evidence of a variety of interventions was reported in the meta-
review by Novak et al. (2013). However, all intervention options
did not necessarily focus on pain management. For example,
constraint-induced movement therapy (CIMT), bimanual
training and occupational training following BoNT aim to
improve functioning in the upper limbs rather than to reduce
pain. The effectiveness of interventions was based on the
framework of Grading of Recommendations Assessment,
Development and Evaluation (GRADE). Grading of
Recommendations Assessment, Development and Evaluation
is developed to assess efficiency and formulate recommendations
along a four-part continuum:
• S+. Strong evidence for (‘Do it’)
• W+. Conditional for (‘Probably do it’)
• W-. Conditional against (‘Probably don’t do it’)
• S-. Strong evidence against (‘Don’t do it’).
Table 1 explains the levels of evidence for intervention
options relevant for pain management related to the three
selected categories of outcomes from Novak et al. (2013). For
a more detailed explanation of these interventions, refer to
Appendix 1.
From Table 1, it is clear that interventions such as
neurodevelopmental therapy (NDT), casting or hip bracing
to reduce spasticity do not have sufficient levels of evidence
(W- and S-) to prove them to be beneficial interventions to
treat pain in children with CP (Novak et al. 2013) as some
healthcare professionals tend to believe (Nilsson et al. 2016).
It is further important to mention that according to Novak
et al.’s (2013) level of evidence, lower limb casting has S+
evidence for contracture management but W- for spasticity
management – it is this kind of discrepancy that makes it
difficult for healthcare professionals to discern treatment
choices. Therefore, it is important for researchers and
healthcare professionals to determine if the current
intervention practices used are evidence based and could, in
fact, support pain management in children with CP.
TABLE 1: Levels of evidence for a sample of pain management intervenon opons related to the three categories of expected outcomes from Novak et al. (2013).
Level of evidence Intervenon opons/outcome
Spascity management†Contracture management†Improved motor
acvies and funcon†
S+
‘Do it’ Botulinum toxin (BoNT)
Diazepam
Selecve dorsal rhizotomy
Casng lower limb‡Bimanual training
Constraint-induced movement therapy (CIMT)
Context-focused therapy
Goal-directed funconal training
Occupaonal training following BoNT home
programmes (parent training included)‡
W+
‘Probably do it’ Baclofen oral
Intrathecal baclofen (ITB)
Tizanidine oral
Ankle foot orthocs (AFOs)
Casng upper limb‡
Orthopaedic intervenons (hip and other surgery)
Orthoc hand
Hand surgery
Single-event mullevel surgery (SEMLS)
Acupuncture assisve technology‡
Biofeedback
Early intervenon‡
Electrical smulaon‡
Hippotherapy‡
Hydrotherapy‡
Seang and posioning (including pressure care)‡
SEMLS and therapy‡
W-
‘Probably don’t do it’ Casng (upper and lower limbs)
Dantrolene
Intramuscular injecons of alcohol or phenol
Stretching manual‡
Conducve educaon
TheraSuits§
Vojta¶
S- Hip bracing NDT‡NDT‡
‘Don’t do it’ - - Hyperbaric oxygen
Sensory integraon (SI)
Source: Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N. et al., 2013, ‘A systemac review of intervenons for children with cerebral palsy: State of the evidence’, Developmental
Medicine & Child Neurology 55(10), 885–910. hps://doi.org/10.1111/dmcn.12246
NDT, neurodevelopmental therapy.
†, Intervenon opons determined as most relevant for pain management.
‡, Intervenons reported by parcipants as benecial for the child’s pain management.
§, Exercise technique using a so dynamic propriocepve orthoc device to facilitate motor performances of children with CP (Alagesan & Shey 2010).
¶, A ‘dynamic neuromuscular treatment method based on the developmental kinesiology and principles of reex locomoon’ (Vojta 2019).

Page 4 of 13 Original Research
hp://www.ajod.org Open Access
Aim
This study focused on pain management for children with
CP in South African schools for children with special
educational needs. The aim was to investigate how
interventions that the professionals reported as beneficial for
the child’s pain management complied with published
international evidence-based interventions for children with
CP, as reported by Novak et al. (2013) at the time of data
collection. Another aim was to reflect on the participants’
perceptions about interventions or resources perceived
missing to obtain and secure a satisfactory pain management
strategy for children with CP. The intention was to provide
support for an update of knowledge on both individual level
(i.e. professionals) and system level (i.e. decision makers).
Research methods and design
The study followed a descriptive with a directed, qualitative
approach (Hsieh & Shannon 2005). Using a combination of
manifest and latent content analyses (Graneheim & Lundman
2004), professional statements from focus groups were
analysed and reflected against published interventions for CP
reported as effective by Novak et al. (2013, 2014). The study is
limited to pain management in children with CP even though
the larger project, of which this study is a part, addressed pain
assessment and pain management (Adolfsson et al. 2018;
Johnson et al. 2015; Nilsson et al. 2016). Ethics approval was
obtained from the Research Ethics Committee of the University
(GW20140201HS) and permission was granted from the
Gauteng Department of Education (D2014/226), South Africa.
Seng
Principals from five public schools for children with special
educational needs which accommodate children with CP in
the Gauteng area of South Africa gave permission for focus
groups to be conducted with staff at their schools in February
2014. The school principals (or a designated person appointed
by the principal) completed a short questionnaire to provide
the investigators with detailed information on the school, for
example, the ages of the children accommodated in the
school, the number of children in the school, the number of
children with CP in the school as well as whether the school
has a hostel facility (see Table 2). The participating schools
accommodated children with various types of disabilities,
including CP. Three of the five schools were boarding schools
where children from rural areas were accommodated in
hostels. As the children from rural areas had to attend a
boarding school, they typically start schooling at the age of
seven. It was reported by some of the participants that these
children received limited to no early intervention (EI)
services, resulting in hip displacement or dislocations and
chronic nociceptive musculoskeletal pain already present.
Parcipants
Upon consent, 38 staff members from the five schools
participated in five separate focus groups. Criteria for inclusion
were follows: any staff member (e.g. teachers, therapists,
psychologists, social workers and personal assistants) who
worked at the five schools with children with CP (see Tab le 3).
All participants were women except for one who was the
sibling and personal assistant of a child with severe CP. The
age range of the participants was 22–64 years, with an average
age of 44.4 years. In total, 76% of the 11 teacher participants
had at least 4 years of university education with an average of
11. 8 year s ex per ien ce i n w orking wit h c hil dren wi th C P,
attesting to their knowledge of this condition. The 26
participating clinicians represented six professions: nursing
(n = 5), occupational therapy (OT; n = 8), physiotherapy (PT;
n = 6), psychology (n = 1), social work (n = 1) and speech-
language therapy (n = 5). Therapists worked in therapy rooms
and school classrooms with the children.
Data collecon
The five focus group interview sessions included two
identically applied parts, focusing on pain assessment and
pain management, respectively. In the beginning of each
part, one main question was presented, followed by three
supporting sub-questions (Table 4). Piloted interview guides
in English directed the introduction of the topic and the
performance of the focus groups. Three researchers, of whom
two were Swedish and one South African, conducted the
focus group interviews that lasted between 70 and 110 min
per session. The third investigator (a physiotherapist [PT]
having experience with children with CP as well as
conducting focus groups) acted as the moderator (Wibeck
TABLE 3: Background informaon of the focus group parcipants at each school.
Focus group (FG) parcipants FG 1 FG 2 FG 3 FG 4 FG 5
Teacher 1 2123
Special needs teacher 1 0 1 0 0
Nurse 0 1 1 21
Occupaonal therapist 1 1 1 0 5
Physiotherapist 21 1 1 1
Psychologist 0 1 0 0 0
Social worker 0 0 1 0 0
Speech and language therapist 1 2110
Personal assistant 0 0 0 1 0
Source: Adolfsson, M., Johnson, E. & Nilsson, S., 2018, ‘Pain management for children with
cerebral palsy in school sengs in two cultures: acon and reacon approaches’, Disability and
Rehabili taon 40(18), 2152–2162. hps://doi.org/10.1080/0 9638288.2017.1327987; Nilsson,
S., Johnson, E. & Adolfsson, M., 2016, ‘Professionals percepons about the need for pain
management intervenons for children with cerebral palsy in South African school sengs’,
Pain Man agement Nur sing 17(4), 249–226. hps://doi.org /10.1016/j.pmn.2016.03.002
TABLE 2: Background informaon of schools included in the study.
School informaon School A School B School C School D School E
Ages of children (years) 13–21 3–21 6–18 3–21 3–21
Number of children 506 403 329 372 270
Number of children with CP 16 106 126 241 100
Hostel (boarding facilies) Yes (100%) Yes (6%) No Yes (27%) No
Number of teachers 53 49 28 34 20
Number of clinicians 7 21 6 28
Source: Johnson, E., Nilsson, S. & Adolfsson, M., 2015, ‘Eina! Ouch! Eish! Professionals’
percepons of how children with cerebral palsy communicate about pain in South African
school sengs: Implicaons for the use of AAC’, Augmentave and Alternave
Communicaon 31(4), 325–335. hps://doi.org/10.3109/07434618.2015.1084042; Nilsson,
S., Johnson, E. & Adolfsson, M., 2016, ‘Professionals percepons about the need for pain
management intervenons for children with cerebral palsy in South African school sengs’,
Pain Management Nursing 17(4), 249–226. hps://doi.org/10.1016/j.pmn.2016.03.002
CP, cerebral palsy.
The number of children at the five schools varied from 270 to 506, of whom 16–241
(3% – 65%) were diagnosed with CP (Table 2).

Page 5 of 13 Original Research
hp://www.ajod.org Open Access
et al. 2007). The first investigator (a special needs teacher who
specialises in pain communication) typed all statements on a
laptop and assisted the participants in Afrikaans where
necessary. The second investigator (a paediatric nurse with
specialisation in pain management) reflected on the
statements and asked for more information when needed.
The statements were projected onto a wall as they were
typed, and the discussions were audio-recorded to be used as
a reference for the researchers’ data analysis. At the end of
the sessions, a member check was performed. All statements
were jointly reviewed and revised or extended where
necessary. To validate the data and enable participants to
determine that the statements truly represented their
experiences, two final questions were asked (White &
Verhoef 2005): (1) do these findings accurately represent your
experiences? and (2) is there anything we have missed that
you feel should be included? For the purpose of this study,
statements considered included professionals’ information
about their use of methods, knowledge about methods that
would be beneficial in their opinion and information about
interventions or resources they perceived missing to address
pain management of children with CP.
Data analysis
The statements (mostly equal to one meaning unit) were
entered on separate spreadsheets for the five focus groups.
A few comprehensive statements included two meaning
units (Graneheim & Lundman 2004). For analyses in this
study, all statements related to pain management were
merged onto one spreadsheet, that is, both statements
related to current strategies and requested additional
resources. Reductions were made because of duplications
and statements not related to CP or pain experiences.
All statements were initially reviewed and interpreted
together by all investigators. Because the strategies about
pain management often included several underlying
meanings, the statements had to be interpreted according
to the context, which is why a manifest approach was
not sufficient. Statements about interventions that focused
directly on pain management were linked to one of the
categories of evidence-based intervention options for
children with CP, as identified by Novak et al. (2013), and for
the purpose of this study determined as most relevant, that
is, spasticity management, contracture management or
improved motor activities and function.
In the next step, the statements were condensed, labelled with
a code and sorted into two categories that had previously
been identified in the larger project by Nilsson et al.
(2016): treatment strategies (i.e. ‘hands-on’ or immediate
treatment strategies and medication to relieve pain) and
environmental strategies (i.e. interventions influencing a
child’s environment). To be clear about the underlying latent
content in statements, all three investigators reviewed the
linkages and jointly discussed professional interpretations.
Thereby, the interpretation could lean on a multidisciplinary
background knowledge. Finally, identified interventions
were analysed and related to the updated knowledge reported
in the contemporary meta-review by Novak et al. (2013).
Before the discussion of results, the four levels of evidence
were dichotomised into higher and lower levels to indicate
intervention options that should be used (S+ and W+) and
that should not be used (W- and S-) for pain management.
Ethical consideraons
Ethics approval was obtained from the Research Ethics
Committee of the Faculty of Humanities at the University of
Pretoria (GW20140201HS) and permission from the Gauteng
Department of Education (D2014/226) in South Africa.
Results and discussion
The five focus groups generated 164 statements that included
information about available intervention options and 47
statements on the perceived need for additional interventions
or resources. For the analysis, 21 of the statements about
additional resources were excluded as they did not focus on
pain management but rather on the need for extended
resources. Examples of such resources were emotional support
and speech training, help with self-care and schoolwork, or
support at home that were not the focus of this article.
From one of the statements, one could understand how a
child in pain might affect everyone around:
Keeping mind off the pain – she will smile and relax (gets quite
tense when she is in pain) – peers in classroom also struggle to
attend to their work – they feel sorry for them. (Teacher in FG4,
Statement 49)
Another statement indicated the breadth of the problems that
could exist for the children with CP and that could be taken
into consideration in a school setting:
TABLE 4: Quesons and supporng sub-quesons used during focus group interviews.
Focus Main queson Sub-queson
Pain assessment 1. What are your experiences of persistent pain in children with CP in your
school? 1.1.
1.2.
1.3.
How do you observe a child with CP in pain?
How do you communicate pain to the child with CP?
How do children with CP communicate their pain?
Pain management 2. Which strategies and acons for pain management do you use to try to
support children with CP to become acve parcipants in the school
acvies, despite acute and chronic pain?
2.1.
2.2.
2.3.
How would you act when a child with CP is in pain?
Which other strategies have you tried to manage pain in children with CP?
If you could do anything, what would you like to do?
Source: Adolfsson, M., Johnson, E. & Nilsson, S., 2018, ‘Pain management for children with cerebral palsy in school sengs in two cultures: acon and reacon approaches’, Disability and
Rehabilitaon 40(18), 2152–2162. hps://doi.org/10.1080/09638288.2017.1327987; Johnson, E., Nilsson, S. & Adolfsson, M., 2015, ‘Eina! Ouch! Eish! Professionals’ percepons of how children
with cerebral palsy communicate about pain in South African school sengs: Implicaons for the use of AAC’, Augmentave and Alternave Communicaon 31(4), 325–335. hps://doi.org/10.3
109/07434618.2015.1084042; Nilsson, S., Johnson, E. & Adolfsson, M., 2016, ‘Professionals percepons about the need for pain management intervenons for children with cerebral palsy in South
African school sengs’, Pain Management Nursing 17(4), 249–226. hps://doi.org/10.1016/j.pmn.2016.03.002
CP, cerebral palsy.

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Constipation – put them on a mat or standing frame helps with
constipation – work in a standing frame they are active
participants, tables on different levels (basic standing frame). (PT
in FG5, Statement 12)
These comments showed that not only musculoskeletal
problems but also gastrointestinal dysfunction may cause
pain in children with CP (Engel & Kartin 2006). Novak et al.
(2012) also reported that constipation is a problem in more
than 25% of children with CP.
Findings showed that the participants’ ideas about strategies
beneficial for pain management of children with CP could fit
into the three categories of outcomes as identified by Novak
et al. (2013) and relevant for pain management (see Table 1).
The subsequent discussion of the results will thus reflect
participants’ concerns of their compliance with up-to-date
knowledge as reported by Novak et al. (2013) (Table 5).
Current intervenon opons
Treatment strategies with higher-level evidence
Most of the treatment strategies discussed during the focus
groups concerned motor activities and functioning (see
Table 1). Not all statements really explained what it was
about, but typically physiotherapy plays a central role in
managing CP (Anttila et al. 2008). Motor activities focus on
gross motor functioning and mobility and PTs use a variety
of physical approaches to promote the well-being of a child.
The role of a PT is related to that of an occupational therapist,
who mostly focuses on fine motor functioning. Both of these
professions teach caregivers how to handle their child at
home and recommend mobility devices when needed. Many
interventions mentioned by the participants fell within the
framework of these two professions, and teachers seemed to
lean against them as they often referred a child in pain to a
therapist or asked the therapist to come to the classroom to
support the child.
Early intervention, that is, child rehabilitation, and orthopaedic
management must be prioritised because even if it cannot
lessen the severity of the condition, it can stop the worsening
of the status of CP and improve the child’s well-being
(Herskind, Greisen & Nielsen 2015; Novak et al. 2017).
Because of musculoskeletal problems, a child with CP can
become progressively worse without intervention that could
lead to nociceptive musculoskeletal pain. Therefore, early
special care should be provided to children with CP in South
Africa as CP cannot be cured. In addition, EI may have the
potential to prevent chronic nociceptive musculoskeletal
pain arising from non-treatment at an early age. To become
effective, Novak (2014) reports that EI should be child-active,
repetitive and structured, including gross and fine motor
functions. Even though the meta-review by Novak et al.
(2013) does not specifically focus on pain-related
interventions, it is well known that pain in children with CP
has its sources in hip dislocation, scoliosis, spasticity, tension,
short muscles (i.e. contractures) and posture (Novak 2014;
Stähle-Öberg & Fjellman-Wiklund 2009). Therefore, one can
assume that improved mobility affects pain favourably. For
example, because the child can load the skeleton to reduce
spasticity, perform movements that prevent contractures,
and adjust the position in sitting and standing.
It is further suggested that goal-directed functional training
to improve motor activities should be included in the
standard care of children with CP (Novak et al. 2013) to
prevent chronic nociceptive musculoskeletal pain. The goals
are set together with the family to make them meaningful
and realistic, while the performance of interventions is
simultaneously discussed. Tasks that are considered
important enhance the child’s motivation and lead to more
frequent training, especially if they are experienced as fun
and mean improved participation in desired contexts (Novak
2014; Rosenbaum & Gorte 2012). Three specific intervention
options with higher level of evidence were mentioned by the
participants: hydrotherapy, electrical stimulation and
hippotherapy. However, it was not obvious to what extent
they were available.
Context-focused therapy is another compensatory approach
that could be used from early age. It is compensatory but not
focused on the child. Instead, the task or the environment is
changed to promote the child’s successful task performance.
In school settings, training could be integrated during classes
by using standing positions, arranging materials to force
reaching movements or short walks (Adolfsson et al. 2018).
Seating and positioning (including pressure care) were
frequently mentioned by both teachers and therapists who
seemed aware of its importance. In addition to preventing or
reducing pain, correct seating and positioning could prevent
contractures or scoliosis (Novak et al. 2017), improve hand
and arm functioning (Cans, De-la-Cruz & Mermet 2008) or
reduce the risk of pressure ulcers. It was a positive fact that
all participants seemed to understand the importance of this
intervention option.
Home programmes and parent training generally aim to improve
the motor activity performance of children with CP (Novak
et al. 2013). To achieve a high level of evidence, such
TABLE 5: Treatment and environmental strategies as reported by parcipants as
benecial for children’s pain management based on Novak et al.’s (2013) levels
of the evidence of intervenons for children with cerebral palsy.
Level of evidence Treatment strategies Environmental strategies
Higher levels of evidence: S+
‘Do it’
W+
‘Probably do it’
Home programmes
Pressure care
Seang and posioning
Early intervenon
Parent training
Hydrotherapy
Electrical smulaon
Hippotherapy
Casng lower limb
Lower levels of evidence: W-
‘Probably don’t do it’
S-
‘Don’t do it’
Stretching manual
Neurodevelopmental
therapy (NDT)
-
Source: Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N. et al., 2013, ‘A
systemac review of intervenons for children with cerebral palsy: State of the evidence’,
Developmental Medicine & Child Neurology 55(10), 885–910. hps://doi.org/10.1111/
dmcn.12246

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programmes and training should be child-active, repetitive
and structured with functional tasks meaningful for the child
(Novak 2014). Most often, caregivers have the task of
initiating the training in home settings and therefore they
should be trained to understand how important it is to
regularly exercise. The participants expressed an ambition to
share their inter-professional knowledge with the caregivers:
‘home visits – whole team go together to the home to assist
caregivers how to help the child at home’ (FG5, Statement
26). It could, for example, be ‘not to leave the child in
wheelchair the whole day [but in] different positions’ (FG3,
Statement 8). Frequent positioning could prevent children
from developing contractures and thus attend classroom
activities with less pain. To enable regular training for pain
management in addition to general developmental training,
parent support activities such as parent evenings, support
groups or newsletters had previously been offered by the
schools. Among the topics discussed were the following:
‘what type of shoes to buy for the child (ankle boot rather
than slipper); perceptual development of the child, and what
games parent could play with child and why’ (OT, FG3,
Statement 7). Enhancing caregivers’ competence in pain
management could positively influence their self-worth and
own feelings of being in control (Dunst & Dempsey 2007).
Regrettably, the implementation of parent activities had met
many obstacles, such as caregivers’ low level of education,
their poor literacy skills, lack of transportation or finances to
travel to the school (Adolfsson et al. 2018). As such, none of
the participating schools offered courses for caregivers
during the time of data collection, although it is regarded as
a recommended high-level evidence intervention option. It is
recommended that school-based therapists should become
creative in their support to caregivers. The possibility of
using mobile phones to provide parent training could be
investigated, as reports indicate that 51% of South Africans
own smartphones (Silver & Johnson 2018).
Treatment strategies with lower-level evidence
All of the treatment strategies discussed so far were
recommended by Novak et al. (2013). Other strategies
mentioned during the focus groups could be reconsidered
because of their low levels of evidence. Even though the
statements were interpreted according to the context, the
specific intervention was sometimes not clarified. For
example, stretching could be described as child-active: ‘pain
can’t be an excuse – in class, stretch, get the muscles moving,
get muscles warm – the way to get children involved =
moving around a lot, moving around will help with pain,
stretch muscles, children are active in class, move around’
(OT, FG5, Statement 4). It could also be interpreted as a use of
casting constant stretching, but most often it was understood
as manual: ‘when she tells her leg is sore, he will pull her’
(PT, FG4, Statement 4).
Contracture prevention via manual stretching is a child-passive
intervention with rather weak evidence that it can increase the
range of movement, reduce spasticity or improve walking
efficiency in children with spasticity (Novak et al. 2013). Passive
(manual) stretching means that a child moves the targeted joint
to the available end range of motion supported by a therapist or
other person (Gorter et al. 2007). According to Pin, Dyke and
Chan (2006), sustained stretching of longer duration would be
preferable to improve range of movement and to reduce
spasticity of muscles. In addition to passive stretching, three
more categories can be distinguished (Gorter et al. 2007): (1)
active stretching, that is, without support and preferably within
daily activities, (2) therapeutic stretching with techniques based
on proprioceptive neuromuscular facilitation and (3) sustained
passive stretching supported by mechanical means, such as
standing table or equipment such as orthoses, splinting or
casting. Decisions on the most relevant stretching technique
could be guided by questions (Gorter et al. 2007). If the child is
able to actively move the joint to the available end range of
motion, active stretching within daily activities is recommended.
If not, one should focus on the child’s ability to move the joint
actively. If the child lacks this ability, sustained passive stretching
is recommended. If the child is able to actively move the joint,
the PT can choose between, or combine, all the alternative
stretching options.
Mechanisms of muscle contracture in children with CP are not
clarified and evaluations of the effectiveness of different
stretching techniques are unresolved, mainly because of
methodological flaws in many studies, the samples studied
being too small or that there are too few studies in the
evaluations. Wiart et al. (2008) conclude that more research is
needed to explore the structural changes that occur in the
shortened muscles of children with CP and the effects of
stretching practices. They recommend that PTs should consider
innovative alternatives and strategies to integrate therapy with
fun, everyday physical activities that the children like.
During the focus groups, therapists regularly mentioned
NDT and asked for education to increase their skill levels.
Neurodevelopmental therapy is a child-passive, time-
consuming, widely spread motor therapy. During the past 50
years, NDT has influenced physical, occupational and speech
therapies but has been evaluated as less effective in movement
and functioning (Butler & Darrah 2001). Although NDT
includes positioning presented as ‘reflex-inhibiting’ postures,
it does not carry over into movement or function, and based
on strong evidence it does not improve contracture and tone
(Butler & Darrah 2001; Novak et al. 2013). Novak et al. (2013)
recommend casting as a better intervention for contracture
management, BoNT as more effective for tone reduction and
motor learning as better for functional motor gains to help
children to take control over their own movement, including
balance. Therefore, and compared to NDT, it is better to
identify functional, meaningful tasks to treat the children in
their daily settings where they live, play and learn.
Environmental strategies with
higher-level evidence
Casting is an alternative and merely preventive intervention
that is best used in new contractures (Novak 2014). It means
that individually adapted plaster casts are applied to limbs in

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a stretched position, aiming to entail muscle lengthening,
that is, sustained passive stretching supported by mechanical
means. The fact that no statements were made about pain in
upper limbs could be a proof that pain in children with CP is
more often located in the legs than in arms and the discussion
is limited to lower limbs.
Casting is less effective than surgery, while ‘standing frames’,
which were frequently mentioned by participants as being
used for a similar purpose, are even less effective than
casting. ‘Position with open hips in standing frames to
develop the joint’ (OT, FG3, Statement 8). However, standing
frames are beneficial in the sense that they can be used by
more than one child. Even though they are not individualised,
standing frames could be useful for patients with low bone
density or constipation (Novak et al. 2013).
Addional resources perceived
as missing
Treatment resources
Medication for spasticity reduction (BoNT, baclofen, etc.): it is
essential to conduct pain screening to identify pain
prevalence, localisations and patterns of distribution to
classify pain and consider the multiple mechanisms which
may contribute to pain. However, it is also necessary that
healthcare professionals immediately acknowledge pain and
focus on pain reduction (Westbom et al. 2017). Botulinum
toxin treatment has most often been used in 4–6-year olds to
reduce spasticity (Franzen, Hägglund & Alriksson-Schmidt
2017). Healthcare professionals should offer evidence-based
intervention, such as BoNT, although it is necessary to carry
out intervention in a comfortable way (Nilsson et al. 2017).
The children with CP in South African schools lacked medical
treatment in terms of evidence-based medicine (Nilsson et al.
2016). It was reported that it is difficult for children with CP to
access effective pharmacological agents such as BoNT and
baclofen, as professionals at schools are not allowed to provide
children with medicine without a medical doctor’s prescription.
Other challenges reported were related to, for example, financial
constraints, long waiting times for medical appointments or
nurses’ understanding that these pharmaceuticals caused
negative side effects, such as drowsiness (Tabl e 6). The
availability of medical doctors in the school teams to better
institute evidence-based care for pain management and hip
surveillance programmes for children should thus be explored.
Surgery and postoperative therapy: many children with CP
may benefit from orthopaedic hip or other surgery. Single-
event multilevel surgery (SEMLS) is explained by Novak et
al. (2013) as:
[A] series of simultaneous orthopaedic procedures at different
levels of the lower limb to manage contractures, optimise skeletal
alignment, improve gait, and prevent ambulation deterioration
or postural deterioration secondary to musculoskeletal
deformities. (p. 895)
Novak et al. (2013) state that SEMLS could avoid multiple
surgeries. Findings from an interview study with caregivers
added that hip and scoliosis surgery reduced the children’s
pain (Stähle-Öberg & FjellmanWiklund 2009). Child-active
physiotherapy during at least 1 year after orthopaedic
surgeries is recommended to improve functioning, for
example, the child’s gait level (Table 6).
Environmental resources
Statements concerned the availability of external medical
facilities (Table 6), such as hospital care for children with CP
from a young age, perceived to prevent deformities and
unnecessary suffering: ‘Children were never managed and
picked up from early on (primary healthcare) – deformities’
(FG1, Statement 26). Participants wanted the children to get
what they need on time, such as faster access to surgery,
postoperative care facilities and access to rehabilitation. In
addition, statements involved improved hospital care for
children whose caregivers did not have medical aid and
giving priority to the disabled – especially children.
The statements suggested that – aside from orthopaedic
surgeons – children in South Africa may not have sufficient
access to orthotics and prosthetics services and reinforced the
challenge of gaining access to external specialists (e.g.
orthopaedic professionals in public hospitals) for the
children’s orthopaedic needs. According to a recent report,
there is no shortage of orthopaedic professionals in South
Africa (Ramstrand 2018). This report stated that 793 educated
prosthetics and orthotics professionals (PoPs) were available,
a number that is estimated as sufficient. Compared to
developing countries where the recommendation is set to
5–10 PoPs per 1 million citizens, a sufficient number for
South Africa’s 56 million citizens should be 560 PoPs. As
health professionals at schools for special educational needs
treat the children with CP, the opportunity for them to refer
the children to external resources without the long waiting
times at public hospitals (as mentioned during the focus
groups) should be investigated.
TABLE 6: Addional treatment and environmental resources that professionals
perceived as needed to obtain and secure a sasfactory pain management for
children with cerebral palsy related to the levels of the evidence of intervenons
for children with cerebral palsy as reported by Novak et al. (2013).
Level of evidence Treatment resources Environmental resources
Higher levels of evidence:
S+
‘Do it’
W+
‘Probably do it’
Prescripon of medicaon
for spascity reducon
Accessibility to BoNT
Surgery
Postoperave therapy
Accessibility to external
medical
resources/possibility to
send referrals to specialist
Assisve/technical devices
for standing,
sing, mobility and
communicaon
Lower levels of evidence:
W-
‘Probably don’t do it’
S-
‘Don’t do it’
NDT
Source: Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N. et al., 2013, ‘A
systemac review of intervenons for children with cerebral palsy: State of the evidence’,
Developmental Medicine & Child Neurology 55(10), 885–910. hps://doi.org/10.1111/
dmcn.12246
CP, cerebral palsy; NDT, Neurodevelopmental therapy.

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Other resources perceived as missing
The participants expressed that they needed education in
pain management to improve their opportunities to help
the children. One such topic could be the use of evidence-
based medicine.
Acon or reacon approaches
Most of the strategies in South African schools had a reaction
approach, that is, strategies to intervene when a child is already
experiencing pain (Adolfsson et al. 2018). In all focus groups,
hip pain was mentioned as a main cause of pain, which might
explain the participants’ focus on positioning. A transition to
an action approach would most likely help by reducing the
children’s spasticity and prevent severe contractures leading
to hip displacement progressing into dislocation. Hip
dislocation is preventable through early identification and
intervention. As hip displacement is directly related to the
level of GMFCS and most children remain at the same level
from 2 years of age, this system could be used to identify hips
at risk and indicate the need for interventions and systematic
follow-ups in terms of hip surveillance programmes
(Hägglund, Lauge-Pedersen & Wagner 2007).
Positive outcomes of hip surveillance programmes have been
reported by researchers (Hägglund et al. 2007, 2014; Wynter et
al. 2011). Such programmes include a standardised individual
follow-up of gross motor function, clinical assessment and
radiological review. It is an ongoing process that is jointly
followed by PT, OT and orthopaedic surgeons and should
continue until skeletal maturity so that the right interventions
can be provided in a timely manner. Intervention plans include
first non-surgical strategies, such as positioning, use of
orthotics and assistive devices and spasticity-reducing
pharmaceuticals. In addition, reconstructive hip surgery and/
or SEMLS might be necessary. Preventive surgery can include
adductor-psoas tenotomy, various osteotomies of the proximal
femur or pelvic reconstruction (Hägglund et al. 2014).
Thomason and Graham (2014) pinpoint surgery as essential,
providing very good outcomes and an improved quality of life
for many children with CP.
Novak (2014) refers to alternatives for effective rehabilitation
intervention programmes that could also include pain
management intervention. These should ‘include child-
active learning-based interventions for motor and functional
skill performance gains’ (Novak 2014:1151). Examples were
given as bimanual therapy, CIMT, goal-directed training,
home programmes and occupational therapy after
BoNT. Other alternatives were orthopaedic and therapy
interventions such as bisphosphonates, BoNT, casting,
diazepam, fitness training and active hip surveillance, as well
as compensatory and environmental interventions, such as
context-focused therapy. In South African school settings,
all the elements of recommended interventions are not
relevant in addition to learning tasks. However, healthcare
professionals who are working in the schools could keep the
alternatives in mind and work for an enhanced focus on
preventive pain interventions, implementation of a hip
surveillance programme and improved collaboration with
external doctors, such as orthopaedic surgeons.
Limitaons
The fact that the data collection was conducted 5 years ago is
one of the limitations of the study. Evidence of pain
management in children with CP may have changed over
these past 5 years but up-to-date universal pain management
strategies have been described and discussed in the article.
Nonetheless, this study clearly showed a discrepancy
between published guidelines and clinical practice within
school settings. As a more recent meta-review has not been
found, the scientific knowledge is deemed valuable even
today. Another possible change during the years concerns the
intervention options in the schools. Therefore, a follow-up of
this study with new data collection evaluating whether the
conditions may have changed since data collection is
proposed. As the study was limited to the Gauteng province
of South Africa, the results cannot be generalised for the
whole country.
Conclusion
This study showed a discrepancy between published
evidence and clinical practice for the management of chronic
nociceptive musculoskeletal pain in children with CP as
reported by professionals working in South African school
settings. The results showed that even if evidence of best
practice in pain management exists, it may not guarantee that
children with CP receive this management in their daily care
within school settings. If chronic nociceptive musculoskeletal
pain is not acknowledged and treated, it might affect the
children’s learning and development.
Recommendaons for implementaon
in pracce
Improved knowledge about and accessibility to pain
management interventions are needed, such as:
• education about evidence-based practice for interventions
of children with CP
• systematic follow-ups of the health status of children
with CP, focusing on the hip displacement and muscle
contractures
• orthopaedic resources such as surgeons, prosthetics/
orthotics professionals and individually adapted orthotic
devices
• shorter waiting times for doctors’ appointments
• medication for spasticity reduction, for example, BoNT
and baclofen
• better opportunities for collaboration with caregivers
• treatment integrated in daily settings where children live,
play and learn.
Acknowledgements
The authors wish to thank the participants who generously
shared their experiences. They also thank the principals of

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the schools involved in this study, who gave permission for
their staff to participate in the focus groups.
Compeng interests
The authors declare that they have no financial or personal
relationships which may have inappropriately influenced
them in writing this article.
Authors’ contribuons
All authors agree to be accountable for the content of the
work. They all collaborated in the planning, data analyses
and writing of this article. As notified in the ‘Method’
section, the three authors had different professional
backgrounds and their involvement in the different steps of
the data collection process and analysis was essential and
therefore explained.
Funding informaon
This research received no specific grant from any funding
agency in the public, commercial or not-for-profit sectors.
Data availability statement
Data sharing is not applicable to this article as no new data
were created or analysed in this study.
Disclaimer
The views expressed in this article are the authors’ own and
not an official position of any of the institutions.
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Appendix starts on the next page →

Page 12 of 13 Original Research
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Appendix 1
TAB LE 1-A1: Levels of evidence (GRADE†) for intervenon opons relevant for pain management. Descripons from Novak et al. (2013:888–897) or Novak (2014:1148–1151).
Intervenon Health and secondary prevenon approach Compensatory and environmental approach
S+. Strong evidence for (‘Do it’)
Spascity management Botulinum toxin (BoNT) A drug injected into overacve spasc muscles to block local spascity. The drug is also used to
manage local dystonia.
Diazepam An oral medicaon used for managing global spascity.
Selecve dorsal rhizotomy A neurosurgical procedure used to selecvely sever nerve roots in the spinal cord, to relieve
spascity. The procedure is only eecve for children with pure spasc diplegia and good pre-surgical
muscle strength and control. The approach can worsen ambulaon in children not meeng these
strict inclusion criteria.
Contracture
management Hip surveillance (maintaining hip joint integrity) Acve hip surveillance and treatment for hip joint integrity to prevent hip dislocaon. Can include a
combinaon of orthopaedic surgery, botulinum toxin, selecve dorsal rhizotomy and physical therapy.
Management and oversight of the hips by an orthopaedic surgeon is recommended.
Casng – lower limb Plaster casts are applied to limbs in a stretched posion to induce muscle lengthening. The amount of
lengthening possible is substanally less than in a surgical approach and is best used in new
contractures.
Motor acvies and
funcon Constraint-induced movement therapy (CIMT) Child-acve, repeve structure training in the use of the hemiplegic upper limb by constraining the
dominant hand. The approach is equally eecve as bimanual training. A dose of 3060 h of therapy
within a 6–8-week period is needed to be eecve.
Both approaches are equally eecve.
Bimanual training Child-acve, repeve and structured pracce in walking, gross motor tasks (e.g. bike riding) or
self-care tasks (e.g. dressing) designed to meet a goal meaningful for the child. In goal-directed
training, the tasks and the environment are also changed to promote skill acquision. It can be
delivered via a home programme.
Goal-directed funconal training Therapeuc pracce of goal-based tasks by the child, led by the parent and supported by the
therapist, in the home environment.
Home programmes Parent (or caregiver) training is included – that is, educang and coaching caregivers to change their
child’s behaviour or skills, plus improve parenng.
Context-focused therapy The task or the environment is changed (but not the child) to promote successful task performance.
Occupaonal training following BoNT Involves child-acve pracce of hand funcon and funconal tasks (chosen by the child as important)
aer BoNT to reduce muscle spascity that augments the eect of BoNT alone.
Pressure care Prevenon of pressure ulcers via good posioning, reposioning and provision of suitable support
surfaces.
W+. Condional for (‘Probably do it’)
Spascity management Tizanidine oral Anspascity medicaon.
Intrathecal baclofen (ITB) Used to manage global severe spascity and dystonia. Baclofen is delivered directly to the spine (and
central nervous system) via a pump surgically implanted within the abdomen.
Baclofen oral An oral medicaon used to manage global spascity and dystonia. In the oral format, the doses need
to be high to induce a clinical eect, but this has to be balanced against the side eect of drowsiness.
Contracture
management Ankle foot orthocs (AFOs) A removable external device is worn over the ankle and foot designed to prevent or manage ankle
contractures as well as promote gait stride length in ambulant children.
Orthopaedics (hip and other surgery) Orthopaedic surgery involves surgical prevenon or correcon of musculoskeletal deformies, for
example, muscle lengthening, osteotomies.
Orthoc hand Immobilisaon hand splinng is a health and secondary prevenon approach that uses custom-
moulded thermoplasc or neoprene hand orthocs designed to hold the hand in a posion of stretch
to prevent or manage contractures.
Single-event mullevel surgery (SEMLS) A specic orthopaedic surgery where a series of simultaneous orthopaedic procedures at dierent
levels of the lower limb to manage contractures, opmise skeletal alignment, improve gait and
prevent ambulaon deterioraon or postural deterioraon secondary to musculoskeletal deformies
are performed. The advantage of this surgical approach is that mulple surgeries are avoided and
outcomes are superior.
Hand surgery Involves surgical prevenon or correcon of musculoskeletal deformies, for example, muscle
lengthening and tendon transfer. Improve hand funcon and alignment.
Motor acvies and
funcon Early intervenon (EI) Very variable. Contemporaneous EI is a child-acve, repeve and structured pracce of gross motor,
hand funcon and learning tasks.
Tradional early intervenon involved general early learning smulaon or child-passive
intervenons where the therapist passively facilitated normalised movement paerns with the aim of
inducing an upstream benet to funconal acvies – tradional early intervenon approaches are
no longer recommended based on current neuroscience evidence.
SEMLS and therapy A series of simultaneous orthopaedic procedures to opmise skeletal alignment and prevent
ambulaon deterioraon secondary to musculoskeletal deformies. Child-acve physical therapy is
recommended for the rst year aer surgery to enable children to inially return to their pre-surgical
gait level and surpass their pre-surgical gait level.
Biofeedback Biofeedback is electronic feedback about muscle acvity to teach voluntary muscle control and is
therefore a child-acve approach.
Hydrotherapy Therapeuc acvies in heated water, where the water provides weightlessness for ease of
movement but also resistance for muscle strengthening.
Electrical smulaon (ES, NMES, FES) Electrical smulaon of a muscle through a skin electrode to induce passive muscle contracons for
strengthening or motor acvaon.
Hippotherapy Therapeuc horseback riding. It is assumed that the horse’s movement simulates and automacally
transfers to the pelvic lt required during walking. For non-ambulant children, somemes the goal of
hippotherapy is to promote postural control for supported sing.
Assisve technology Equipment or devices to improve independence, for example, in acvies of daily living or
parcipaon in educaon.
Seang and posioning Assisve technology that enables a person to sit upright with funconal, symmetrical or comfortable
posture to enable funcon.
Table 1-A1 connues on the next page →

Page 13 of 13 Original Research
hp://www.ajod.org Open Access
TAB LE 1-A1 (Connues...): Levels of evidence (GRADE†) for intervenon opons relevant for pain management. Descripons from Novak et al. (2013:888–897) or Novak
(2014:1148–1151).
Intervenon Health and secondary prevenon approach Compensatory and environmental approach
W-. Condional against (‘Probably don’t do it’)
Spascity management Dantrolene Anspascity medicaon
Intramuscular injecons of alcohol or phenol Muscular injecons to induce chemical denervaon for treang local spascity
Casng Plaster casts applied to limbs to reduce spascity
Contracture
management Stretching manual Use of an external passive force (e.g. parent) exerted upon the limb to move it into a new and
lengthened posion
Motor acvies and
funcon Conducve
educaon (CE) A Hungarian educaonal classroom-based approach to teaching movement using rhythmic intenon,
rounes and groups
Vojta Therapist-applied pressure to dened zones on the body while posioned in prone, supine or side
lying, where the smulus leads to automacally and involuntarily complex movement
TheraSuits Used for eliminaon of pathological reexes and establishing new, correct and funconal paerns of
movements (Author’s comment)
S-. Strong evidence again St (‘Don’t do it’)
Spascity management Hip bracing Includes a variety of hip stabilisers and hip joint supports (Author’s comment).
Contracture
management Neurodevelopmental therapy (NDT, Bobath) Direct, passive handling and guidance to opmise funcon
Motor acvies and
funcon Neurodevelopmental therapy (NDT, Bobath) Direct, passive handling and guidance to opmise funcon
Sensory integraon (SI) Therapeuc acvies to organise sensaon from the body and environment to facilitate adapve
responses (e.g. hammock swinging)
Hyperbaric oxygen (HBO) Inhaled 100% oxygen inside a pressurised hyperbaric chamber
Source: Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N. et al., 2013, ‘A systemac review of intervenons for children with cerebral palsy: State of the evidence’, Developmental
Medicine & Child Neurology 55(10), 888–897. hps://doi.org/10.1111/dmcn.12246; Novak, I., 2014, ‘Evidence-based diagnosis, health care, and rehabilitaon for children with cerebral palsy’,
Journal of Child Neurology 29(8), 1148–1151. hps://doi.org/10.1177/0883073814535503
FES, funconal electrical smulaon therapy; NMES, neuromuscular electrical smulaon.
†, Grading of Recommendaons Assessment, Development, and Evaluaon (GRADE) is developed to assess eciency and formulate recommendaons along a four-part connuum.