Received: 1 November 2022 | Accepted: 23 May 2023

DOI: 10.1111/dmcn.15682

SCOPING REVIEW

F-­words and early intervention ingredients for non-­ambulant

children with cerebral palsy: A scoping review

Ana Carolina De Campos1 | Álvaro Hidalgo-­Robles2 | Egmar Longo3 |

Claire Shrader4 | Ginny Paleg5

1
Department of Physical Therapy, Federal
University of São Carlos, São Carlos-­, SP, Abstract
Brazil Aim: To explore the ingredients of early interventions provided to young children
2
Universidad Internacional de La Rioja, La with cerebral palsy (CP) who are classified in Gross Motor Function Classification
Rioja, Spain
3
System (GMFCS) levels IV and V, and to identify the ‘F-­words’ addressed by the
Department of Physical therapy in Pediatrics,
Federal University of Paraíba, João Pessoa-­, interventions.
PB, Brazil Method: Searches were completed in four electronic databases. Inclusion criteria
4
HMS School for Children with Cerebral were the original experimental studies that fitted the following PCC components:
Palsy, Philadelphia, PA, USA population, young children (aged 0–­5 years, at least 30% of the sample) with CP and
5
Montgomery County Infants and Toddlers significant motor impairment (GMFCS levels IV or V, at least 30% of the sample);
Program, Rockville, MD, USA
concept, non-­surgical and non-­pharmacological early intervention services measur-
Correspondence ing outcomes from any of the International Classification of Functioning, Disability
Ana Carolina de Campos, Rua Sancorso and Health domains; and context, studies published from 2001 to 2021, from all set-
Chimirri 268, São Carlos-­São Paulo,
13563-­723, Brazil. tings and not limited to any specific geographical location.
Email: accampos@ufscar.br Results: Eighty-­seven papers were included for review, with qualitative (n = 3), mixed-­
methods (n = 4), quantitative descriptive (n = 22), quantitative non-­randomized
(n = 39), and quantitative randomized (n = 19) designs. Fitness (n = 59), family
(n = 46), and functioning (n = 33) ingredients were addressed by most experimental
studies, whereas studies on fun (n = 6), friends (n = 5), and future (n = 14) were scarce.
Several other factors (n = 55) related to the environment, for example, service pro-
vision, professional training, therapy dose, and environmental modifications, were
also relevant.
Interpretation: Many studies positively supported formal parent training and use of
assistive technology to promote several F-­words. A menu of intervention ingredients
was provided, with suggestions for future research, to incorporate them into a real
context within the family and clinical practice.

Thanks to collective efforts, much progress has been made
in the care of children with cerebral palsy (CP) classified in
all Gross Motor Function Classification System (GMFCS)
levels in the past decade, with decreases in incidence and se-
verity evident in most high-­income countries.1–­3
The development of gross motor curves for CP has shown
that the acquisition of gross motor skills occurs at the high-
est rates in the first few years of life. Children who are clas-
sified in GMFCS levels IV and V reach 90% of their gross
motor potential by age 3 years.4 In high-­income countries,
25% to 40% of children with CP may function at these levels,
while these numbers may be above 50% in low-­and middle-­
income countries,3 which makes the accurate identification
Dev Med Child Neurol. 2023;00:1–11.
and referral of these infants as early as possible of utmost
importance, especially in low-­resource areas.
The availability of robust screening tools has made it pos-
sible to provide early identification of CP and prediction of
functioning levels before 12 months of age. Using Prechtl's
General Movement Assessment and the Hammersmith
Infant Neurological Examination, we can now identify
which infants are at the highest risk of being non-­ambulant.5
Having a General Movement Assessment Motor Optimality
Score below 7,6 and a Hammersmith Infant Neurological
Examination score below 40 at 3 to 6 months of adjusted age7
are most associated with children classified in GMFCS levels
IV and V at age 2 years.
wileyonlinelibrary.com/journal/dmcn © 2023 Mac Keith Press. | 1
2 |    DE CAMPOS et al.
Non-­ambulant children are at the highest risk of devel-
oping a musculoskeletal pathology, especially hip displace-
ment, contractures, deformity, and pain.8 Identifying these
children can support timely interventions. For example, dis-
use atrophy of muscle (sarcopenia) can be seen as early as
9 months of age;9 promoting gross motor skills is probably
most effective before muscle contractures develop, that is,
from 0 to 4 years of age.10
Children classified in GMFCS levels IV and V also have
an increased risk of associated comorbidities (e.g. seizures,
visual impairment, feeding disorders, sleep disturbances);11
therefore, the numbers and variety of interventions children
may need is high. Increasingly, the literature has emphasized
the importance of the well-­being of the family and caregivers
given the high burden associated with care.
Current evidence for early intervention recommends
that intervention ingredients include child-­initiated, child-­
active, family-­centred, as well as task-­and context-­specific
(including coaching and caregiver-­delivered) interventions
that promote engagement and participation.12,13 Practice of
goals in natural environments, such as the home or com-
munity, with a combination of face-­to-­face and home pro-
grammes are also recommended.14 Unfortunately, these
recommendations are difficult to deliver to young children
with little or no motor repertoire. Because of this unaccept-
able gap, children in GMFCS levels IV and V are less likely
to receive evidence-­based interventions.15
While little scientific evidence is available to sup-
port how to address the complex health needs of young
non-­ a mbulant children with CP, the International
Classification of Functioning, Disability and Health16
framework has largely contributed to understanding the
multiple elements that are relevant for health. These ele-
ments should be addressed when delivering interventions
to increase children's ‘participation’ and ‘engagement’ as a
‘means and an end’17 and not by reducing functional lim-
itations and associated impairments in isolation. More re-
cently, the ‘F-­words’ for child development18,19 have helped
to increase awareness about how we should be thinking,
talking, and acting when caring for all children, includ-
ing those with CP, by focusing on functioning, family, fit-
ness, fun, friends, and future. These F-­words are related to
the International Classification of Functioning, Disability
and Health components of activity, environmental factors,
body structures and functions, personal factors, and par-
ticipation respectively, with future not belonging to a spe-
cific component. However, it is not clear how much these
concepts are explicitly incorporated when considering
non-­a mbulant young children with CP.
Therefore, this scoping review aims to explore the in-
gredients of early interventions provided to young children
with CP classified in GMFCS levels IV and V. We provide an
overall menu of interventions offered to the population of
interest, discuss their strengths and limitations, and make
suggestions for future research. The lived experience of a
family member who is part of the study team informed study
development and is shared in the results.
What this paper adds
• Family-­ centred care (including coaching and
caregiver-­delivered interventions) and formal pa-
rental training are effective strategies for children
in GMFCS levels IV and V.
• Assistive technology ingredients (power, mobil-
ity, supported, sitting, stepping, and standing)
may promote several ‘F-­words’ (functioning, fit-
ness, family, fun, friends, and future).
• The lowest level of evidence was found for fun,
friends, and future.
• Other factors (service provision, professional
training, therapy dose, environmental modifica-
tions) are relevant for young children in GMFCS
levels IV and V.
M ET HOD
Study team
A multi-­country study team was assembled for this study
with an emphasis on low-­and middle-­resource areas. To en-
hance the significance of the findings, the team included one
member with lived experience (CS), who is a sibling of two
young adults with CP (classified in GMFCS levels II and IV)
and retains strong memories about her participation in their
early intervention sessions.
Study design
A scoping review was conducted based on the guidelines of
the JBI manual for evidence synthesis.20 The protocol for
this review was registered with the Open Science Framework
registries (https://doi.org/10.17605/​OSF.IO/RXY9Z). The re-
view will be reported according to the Preferred Reporting
Items for Systematic Reviews and Meta-­Analyses for Scoping
Reviews guidelines.
Research questions
What are the ingredients of the interventions available for
young children with CP who are at high risk of being non-­
ambulant, and their families? Which F-­words are encom-
passed in these interventions?
Search strategy
Systematic searches were performed in the following da-
tabases: PubMed, Web of Science, CINAHL, and Scopus.
The manual search included the reference lists of included
F-­WORDS AND EARLY INTERVENTION INGREDIENTS FOR NON-­A MBULANT CHILDREN WITH
CEREBRAL PALSY: A SCOPING REVIEW
papers and expert consultation. Searches were completed in
December 2021. An example of the search string (Scopus da-
tabase) is shown in Appendix S1.
Inclusion criteria were original experimental studies that
fitted the following PCC components: population, young
children with CP (aged 0–­5 years, at least 30% of the sam-
ple) at high risk for non-­ambulant CP (GMFCS level IV or V,
at least 30% of the sample); concept, non-­surgical and non-­
pharmacological early intervention services measuring out-
comes from any International Classification of Functioning,
Disability and Health domain (activity, participation, body
function, body structures, and contextual and environmen-
tal factors); context, studies published from 2001 to 2021,
from high-­income, middle-­income, and low-­income areas;
studies were not excluded based on language.
For studies addressing participants younger than 2 years,
we considered motor score tools other than the GMFCS (e.g.
Motor Optimality Score, Hammersmith Infant Neurological
Examination, Test of Infant Motor Performance, Alberta
Infant Motor Scale, Bayley Scales of Infant and Toddler
Development, Third Edition scores at least 2SD from the
mean) when available to estimate severity.21
When no data were available on the severity of motor
impairment, strategies used were estimating GMFCS level
based on Gross Motor Function Measure scores, contacting
the author, and discussing if there is support in the literature
on the relevance of the outcomes for children at high risk of
being non-­ambulant (e.g. non-­child-­specific outcomes, such
as family and service provision).
Studies were not excluded based on their designs.
Therefore, we included randomized controlled trials, clini-
cal studies other than randomized controlled trials, qualita-
tive studies, systematic reviews, and meta-­analyses. In this
article, we describe all but the reviews and guidelines, which
will be reported in another publication.
Exclusion criteria were based on study design or type (e.g.
study protocols or other studies with no data); longitudinal
or cross-­sectional studies with no intervention and with out-
comes that were not of interest for this scoping review (e.g.
validation of assessment tools); intervention type (e.g. sur-
gical, pharmacological, or any other invasive interventions);
and study sample (older than 5 years, without CP, classified
in GMFCS levels I–­III, animal studies).
Two independent reviewers made the initial selection
and conflicts were resolved through discussion with a
third reviewer to reach consensus. Four reviewers extracted
data from randomly assigned papers and rated study qual-
ity based on study design with the American Academy
for Cerebral Palsy and Developmental Medicine mixed-­
methods appraisal tool.22
Because F-­words may not be explicitly addressed in stud-
ies, the study team developed the methods to identify the
ingredients of the interventions and respective F-­ words
through extensive discussions and consultation with experts.
A list of ingredients was created during a preliminary step
of data extraction.23 The ingredients used in this study in-
cluded specific intervention characteristics such as its main
    | 3
features (e.g. coaching, environmental modifications, motor
control techniques), as well as more general factors, such as
therapist–­child interactions.23 Ingredients were identified
and then linked to F-­words after satisfactory reliability was
reached across evaluators.
R E SU LT S
The literature search resulted in a total of 2758 studies. After
removing duplicates, 2543 studies were screened and 2343
were excluded by reading their titles and abstracts. An ad-
ditional 200 studies did not fit the inclusion criteria and 13
studies were added manually. In total, 87 studies were ana-
lysed and are presented in this article. The flow diagram of
study selection is presented in Figure S1.
The list of the included studies is shown in Table S1.
Study designs included qualitative (n = 3), mixed-­methods
(n = 4), quantitative descriptive (n = 22), quantitative non-­
randomized (n = 39), and quantitative randomized (n = 19).
Regarding participant characteristics, although at least 30%
of the study samples were children under 6 years of age, most
studies did not solely include this age group. The same was
found for the GMFCS levels IV and V classifications. The
country with the largest number of studies was the USA
(n = 17); participants from low-­income and middle-­income
countries were well represented across studies (n = 37). Most
studies were published in English (n = 85), with one study
published in Spanish and another in French.
Next, we present the ingredients of the interventions
sorted according to their respective F-­words (Figure 1). The
full list of outcome measures used in the studies and their
main results is provided in Appendix S2.
Active ingredients of interventions
Table S2 contains the ingredients of the interventions
and the F-­words addressed in each study. Mapping the F-­
words revealed that a predominance of studies focused on
fitness (n = 59), family (n = 46), and functioning (n = 33),
whereas friends (n = 5), fun (n = 6), and future (n = 14) were
infrequently addressed. Other factors were addressed in 55
studies.
Functioning
Functioning ingredients (n = 33) included the following:
goal-­directed training; self-­initiated movements (or speech);
routines-­based approaches; and problem-­solving.
Family
A total of 46 studies were linked to the F-­word ‘family’, which
included ingredients such as home programmes, coaching,
4 |    DE CAMPOS et al.
FIGU R E 1 Intervention ingredients and F-­words in early interventions targeted at non-­a mbulant children with cerebral palsy.
routine-­based interventions, family-­centred services, fam-
ily or caregiver-­delivered care to the child, parental train-
ing, and environmental enrichment. Some studies addressed
families' perceptions of services.
Fitness
Most studies (n = 59) addressed fitness. The ingredients
studied included spasticity management, orthoses, muscle
strengthening, bowel function, pain, sleep, and motor con-
trol. In addition, several studies used environmental modi-
fications to promote self-­initiated movement (e.g. supported
stepping and power mobility) and postural management
(supported custom seating, standing programmes, custom
positioning during lying); in this case, they were linked both
to fitness and other factors.
Fun
Fun was mapped in six studies. Child-­directed play and op-
portunity for the child to demonstrate choice or preferences
were the main ingredients related to this F-­word.
Friends
Only five studies were linked to friends. For children under
6 years of age, both peer interactions and overall social inter-
actions were included, considering that young children in-
teract with peers less often. Interventions addressing friends
often promoted these interactions.
Future
This F-­word was part of 14 studies in this review. Ingredients
were considered under this category when they intended to
prevent known complications in non-­ ambulant children
with CP (such as hip dislocation, contractures, and deform-
ity) in the long term. We categorized interventions as ‘future’
when they showed long-­term results and helped families,
community, and society see the child differently (e.g. coun-
selling, strength-­based, family support, advocacy).
Other factors
Several other factors, mainly related to the environment,
were mapped as ‘other factors’ (n = 55 studies). These in-
cluded ingredients such as service provision, intervention
onset, access to assistive devices, professional training, ther-
apy dose, and professionals' perspectives.
Included in the environmental modifications are all the
assistive devices (e.g. standers, stepping devices, power mo-
bility) that were often used as affordances for functioning,
friends, fun, fitness, and future.
A lived-­experience report on the relevance of the F-­word
approach for child development from one of the authors is
shown in Figure 2.
DISC US SION
This scoping review mapped the ingredients or themes rel-
evant for interventions targeting young children with CP
classified in GMFCS levels IV and V. We used the F-­words in
F-­WORDS AND EARLY INTERVENTION INGREDIENTS FOR NON-­A MBULANT CHILDREN WITH
CEREBRAL PALSY: A SCOPING REVIEW     | 5

The Lived Experience, by Claire Shrader

Some of my earliest memories are of playing beside my brothers in therapy. And that’s exactly what it was
to me, the triplet sister of two boys with cerebral palsy: play. Now, many years later, I am a young
occupational therapist, learning the importance of family-centered care, of interventions that are
intrinsically motivating and child-specific. As I reflect on our experiences in therapy through the years, I
recognize these core elements of pediatric therapy, albeit through my childhood lens. The best therapists
engaged my brothers and I, together, embracing the fact that siblings are often the best peer models and
playmates, using me to motivate my brothers in sessions in the same way I motivated them when we were
playing at home. My brother Mason started walking to catch me; Benjamin and I were inseparable on the
playground once he had his power wheelchair.

The best therapists created interventions that honed in on my brothers’ passions and personalities.
Benjamin’s earliest therapist used Elmo, his favorite, to get him to reach. Mason’s therapist worked with
him in the hallway where passersby would applaud the adorable little boy in the walker; and in turn,
motivate him like nothing else could. Benjamin and Mason are both very different, both in personality and
the presentation of their CP. As such, it was crucial that their therapy was not just adapted to their own
personalities, but also to their abilities. When we were growing up, it was harder to project what level of
gross motor function children would have when they grew up. Today, research affords us the luxury of
having better tools to more accurately predict the unique definitions of each child's journey. We can fine-
tune therapies – get children like Benjamin working on power mobility early, teach them typing skills, and
how to navigate a keyboard. We can more easily recognize when offering switch-adapted toys will be
beneficial.

Because of Benjamin and Mason’s therapists, I have learned how to be family-centered and child-focused.
Because of Benjamin and Mason’s life journeys, I recognize how vital it is that we educate our patients on
how best to direct their own care and be their own best advocates as we seek to help them reach their
personal goals – as we help them be the very best they can be.

FIGU R E 2 Lived-­experience report on the relevance of the F-­word approach for child development (as described by one of the authors).

child development as the framework to identify the focus of Functioning

current research and highlight areas that need to be further
developed in promoting comprehensive, evidence-­ based
care for children in this CP subgroup. During the entire pro-
cess, the study team was supported by the perspective of one
of its members, who is a sibling of two young adults with CP,
and who helped ensure that the results were meaningful and
applicable to real life.
The results include information from high-­resource and
low-­resource areas, with heterogeneous quality ratings.
While most studies investigated the effects of interventions
using non-­ randomized designs, additional designs were
found. These included qualitative or mixed-­methods inves-
tigations describing the perspectives of families and profes-
sionals regarding the interventions, as well as descriptive
studies mapping aspects such as determinants of outcomes
after the interventions. There were 19 randomized studies,
although only five had high-­quality scores. Well-­designed
randomized controlled trials are not always feasible or nec-
essarily optimal when addressing specific concerns with het-
erogeneous populations. Given the evidence gap regarding
children classified in GMFCS levels IV and V, study designs
that identify how this subgroup responds to interventions
are still needed. These studies should have the highest qual-
ity possible, for example, by using wait list controls when it
is not ethical to remove standard care or to recruit the num-
bers needed for sufficiently powered sample sizes.
None of the studies included was explicitly based on the
F-­word framework. Overall, the findings indicate a pre-
dominant focus on the F-­word ‘fitness’, followed by family
and functioning, as well as limited studies on fun, friends,
and future. Next, we discuss the ingredients related to each
F-­word.
Studies using goal-­directed, task-­specific training, which
included self-­initiated movement or speech delivered in
natural environments,21,24–­31 match the current definition of
functional interventions32 and show the feasibility of these
ingredients for non-­ambulant children. Challenges with the
implementation of functioning ingredients include the per-
ception that the severity of motor impairment may limit the
ability of young children to actively participate.33 It is impor-
tant to highlight that active exploration has been related to
the development of cognition; thus, children should not be
missing opportunities to explore their environments. In ad-
dition, the availability of population-­specific measurement
tools and training can help practitioners feel more confident
in implementing these goal-­focused and task-­focused ap-
proaches with non-­ambulant children.
Family
In this review, family-­centred care was mapped as an ingredi-
ent to be considered as a potential determinant of interven-
tion engagement and success of several interventions. The
findings support this as a practice desired by families34–­39
and with potential to promote relevant changes in several
areas.40 However, often families are not sufficiently informed
or cannot understand the information they are given.34,41,42
Coaching24,25,28,43 and educational programmes44 emerged
as low-­cost strategies to empower and engage the family as
the centre of the process of care. Simple educational sessions
may improve caregiver stress,44 mental health,45 quality of
life,46 and their knowledge about CP.47 These programmes
6 |    DE CAMPOS et al.
should be adequately tailored so that the family burden is not
increased.48 More recent studies that did not meet our crite-
ria for inclusion suggest that education may be most effective
when delivered by a team of professionals and parents with
children similar to those of the families participating in these
programmes, which is something to be explored further.49
Several studies addressed this F-­word (family) by means
of qualitative or mixed-­method study designs39,41,50–­55 be-
cause these may be best able to capture personal factors that
are difficult to measure with standardized tools. The finan-
cial strain of caring for a child with complex needs may re-
sult in decisions not to use other services for parent health,
recreation, and educational needs within the family,54 which
may place a high burden on the family in the long term.
Families want resources and wish to receive early diagno-
sis with honest and positively phrased messages.34 They also
need to be supported during transition from preschool to
school.38 Failures in communicating well with the family
may have negative impacts, such as losing hope or faith in
the health system, which may occur when treatment goals
are not clear or unrealistic.55
Fitness
Overall, the ingredients under fitness encompass ideas such
as managing pain, contractures, and deformity, increasing
physical activity, and ensuring adequate nutrition, sleep, and
gastrointestinal function. Among the intervention ingredi-
ents related to prevention, we highlight hip surveillance56 and
postural management57–­68 as components that may minimize
the risk or severity of musculoskeletal impairments. Given
the reduced motor repertoire of this population, increased
physical activity may be promoted by adapting activities to
the child's level of ability so that child-­initiated movement
is possible.69 This can be done by facilitating self-­initiated
movements using assistive devices, such as supported step-
ping devices,70 and dynamic body weight support.31 These
principles may be incorporated into early intervention pro-
grammes such as CareToy, START-­ Play, Goals-­ Activity-­
Motor Enrichment, and Coping with and Caring for Infants
with Special Needs,21,24,25,28,43 so they are applicable for
young children who are likely to be non-­ambulant. In low-­
income and middle-­income countries or families anywhere
with more limited resources, the implementation of these
strategies may only be possible with the use of low-­cost mate-
rials.50 Therefore, the information and the materials needed
for their implementation should be made available by consid-
ering cultural aspects and the availability of resources.
Other commonly addressed ingredients were passive
movements and motor control, and hands-­on techniques
(e.g. suit therapies, facilitation and handling-­ based ap-
proaches, among others).71–­82 These have been the tradi-
tional approaches used with children with CP; however,
recent systematic reviews have challenged their efficacy for
improving functional outcomes and currently rate the ingre-
dients as ‘below the worth it line’.83
Finally, challenges related to sleep, feeding (including gas-
troesophageal reflux), and bowel function profoundly im-
pact the overall health of children and families. They may be
addressed by interventions that include sleep hygiene, fam-
ily education, and early-­onset nutritional intervention.84–­86
These topics should be further explored in future research,
as few studies in this review addressed them. Under a more
comprehensive approach to fitness that includes this broader
view (wellness), we highlight the need for measures that ad-
dress these relevant aspects and interventions.
Fun
Very few studies used child-­directed play, that is, interven-
tions where the child could express choice or preferences, or
those seeking child enjoyment or contentment.24,25,87–­89 Some
studies were listed under this F-­word because they specifically
said that the intervention was fun (e.g. Velasco et al.90); how-
ever, this was often not objectively described or measured.
This gap may be due to challenges in capturing the perspective
of children who often have visual, cognitive, or communica-
tion impairments. Also, young children are often considered
unreliable responders, which may result in a prevalence of
proxy measures, thus further limiting children from taking
a greater role in their care. However, these challenges must
be overcome. Again, assistive technology is a potential me-
diator of inclusion, given the activity limitations experienced
by children classified in GMFCS levels IV and V. Potential
strategies to be explored include eye-­gaze technologies, aug-
mented communication, and augmented reality. The use of
behavioural measures that help to inform about the feelings
and preferences of children during the intervention should
also be considered. Examples include the Pediatric Volitional
Questionnaire, which provides estimates of motivation in
young children (aged 2–­7 years) when interacting with the en-
vironment.91 Qualitative measures (e.g. Photovoice) that cap-
ture the child's experience may also be helpful.
Friends
A component of participation, the social interactions of
young children with CP were unfrequently addressed in the
reviewed studies.24,25,30,37,65,89 Although participation has
only recently attracted attention from the research commu-
nity, there are reports that young children with disabilities
face many challenges to engage in relevant life situations.
The complexity of their motor and cognitive impairment
is an important predictor of participation, especially in
external settings such as school, child care, and commu-
nity.92 However, environmental aspects have a determinant
role.93 Interventions that directly target modifiable factors
are highly needed so children stop missing opportunities to
socialize and learn. Nevertheless, few studies address this
F-­word; this may in part be due to the low availability of ap-
propriate measures.94
F-­WORDS AND EARLY INTERVENTION INGREDIENTS FOR NON-­A MBULANT CHILDREN WITH
CEREBRAL PALSY: A SCOPING REVIEW
Future
Ongoing efforts may be able to change the future perspec-
tives for CP treatment (e.g. Soloveichick et al.95); however,
to date no curative interventions or ones that improve
GMFCS level are currently available. Nevertheless, sev-
eral actions can be taken to change the future of children
classified in GMFCS levels IV and V, including the ones
focusing on prevention and contextual factors. In this
study, we highlight the role of prevention because it has
the potential to affect long-­term results. Musculoskeletal
issues are a leading cause of pain and loss of quality of life
in the transition to adolescence and adulthood and should
be managed early on when a non-­a mbulant prognosis is
made, for example, through hip surveillance. Besides pre-
venting these complications in the long term, postural
management 56–­58,60,96 has the potential to improve activ-
ity and participation levels; its use should be investigated
further as evidence becomes available for children at high
risk of developing non-­a mbulant CP. In low-­resource re-
gions, potentially preventable causes of CP are prevalent
and access to equipment is limited; this warrants actions
to change the future of children living in these areas.97–­99
Interventions that target the attitudes towards children
with disabilities39,44,46,49,55,100 may also have a transforma-
tive role because they may change how society values them
and acknowledges their rights and potential.
Not many studies provided information extended to the
future, but we suggest that studies with a longitudinal ap-
proach may be able to provide relevant information on the
long-­term impact of interventions. One limitation of our
approach is that, when considering young children, many
variables have the potential to affect the future and it may be
difficult to map all relevant influences.
Other factors
Even though the F-­word framework includes environmental
factors within the family, we chose to include other factors
as a separate category of ingredients to highlight their rel-
evance to the population of interest of this study. We do not
mean to create a new F-­word, but rather to draw attention to
these factors because they are interconnected and interde-
pendent with all other F-­words. Professionals need to con-
sider those environmental factors within the family when
using the F-­word framework.
In this review, environmental modifications by means
of assistive devices demonstrated positive outcomes that
can be related to fitness, functioning, friends, and fun. For
instance, assistive devices have been used to promote self-­
initiated mobility87,101,102 and communication.103 Studies
in our review have also shown through proxy measures of
enjoyment that assistive devices can be used as affordances
for fun.50,64,66 Interactions with similarly aged peers and
other social actors (friends) may be favoured using adapted
seating66 and power mobility.101,102 Other assistive devices,
    | 7
such as supported standing and stepping devices, although
not mapped in this review, improved participation in other
studies.104 These resources are therefore valuable because of
the overlap of several F-­words.
Regarding service provision, children classified in GMFCS
levels IV and V may need earlier referral and a higher dose to
respond to the interventions provided.27,30,33,105–­108 However,
access to services,109 training (professional and family),42,110
and assistive technology were identified as major barriers to
care.15,51,97–­99,111
The proportion of GMFCS levels was not evenly dis-
tributed across all countries. Lower-­resource countries re-
ported higher incidences of children classified in GMFCS
levels IV and V. 3 Families in these areas reported that their
children are often housebound and not welcome in their
communities. Mothers reported that their non-­a mbulant
children were viewed as a punishment for their past be-
haviours, with some mothers reportedly shunned from
their villages.49 Other families experienced a complete
lack of medical care, therapy, resources, and even basic
equipment such as wheelchairs and feeding tubes.41,97
Non-­ambulant children were denied access to schools,
playgrounds, restaurants, and other community settings
because of lack of appropriate and transportable assistive
technology.97 As modifiable factors, these should be the
targets of future actions.
General limitations of the current study include the
choice of a scoping review design, which describes the cur-
rent state of the literature but does not allow recommenda-
tions for clinical practice to be made based on the available
evidence. Nevertheless, we believe this initial step was neces-
sary for the development of methods to group the interven-
tions based on the F-­words they address, which will favour
the uptake of the framework in future research. Many re-
searchers are presenting their findings under proprietary
names without complete description of the ingredients of
their intervention(s). We advocate for broadly available in-
formation and knowledge regarding basic scientific prin-
ciples underlying interventions and active ingredients that
address these because it is more important for professionals
to learn about ingredients than to spend scarce resources in
several different black boxes (specifically named and for-­
profit interventions and philsophies, especially ones based
on outdated knowledge and principles) that only those who
are able to pay for expensive training courses can access. We
also recommend that researchers use F-­word terminology in
their work so this type of rewiring can be done more easily
with less need for interpretation, thus speeding up knowl-
edge translation.
Conclusions
This scoping review mapped the ingredients of interven-
tions using the F-­word framework. A menu of interven-
tions ingredients was provided, with suggestions for future
research to incorporate them in objective ways. Several key
8 |    DE CAMPOS et al.
points arise from this review, including: (1) many studies ad-
dress functioning, family, fitness, and other factors; limited
studies address fun, friends, and future; (2) many studies
positively supported family-­centred care and formal parent
training to address the F-­word family, and environmental
modifications (supportive lying, seating, standing, stepping,
and power mobility), due to overlap across functioning, fit-
ness, friends, and fun, for a comprehensive approach for the
population of interest in this study; (3) we suggest that future
research should try to increase the representation of children
at these levels so that high-­quality information specific to
this subgroup of children with CP becomes available, while
also considering the availability of resources and the cul-
tural context when designing studies.
Steps to be taken by future research include an overview
of systematic reviews that will allow recommendations on
effective interventions to be made, and the development of
knowledge translation materials to facilitate the implemen-
tation of F-­words into clinical practice.
AC K N OW L E D G M E N T S
We thank Drs Peter Rosenbaum and Diane Damiano, and
Rachel Teplicky, for their support in developing the meth-
ods. The authors declare no source of funding for this scop-
ing review.
DATA AVA I L A BI L I T Y S TAT E M E N T
Data available in article supplementary material
ORC I D
Ana Carolina De Campos https://orcid.
org/0000-0001-7267-4467
Álvaro Hidalgo-­Robles https://orcid.
org/0000-0001-6294-7476
Egmar Longo https://orcid.org/0000-0001-6263-1818
Ginny Paleg https://orcid.org/0000-0002-2092-4871
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The following additional material may be found online: org/10.1111/dmcn.15682
Appendix S1: Scopus search string.
Appendix S2: Additional information on included studies.
Figure S1: Study flow diagram.
Table S1: Characteristics of the included studies.