DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

‘He does not see himself as being different’: the perspectives of

children and caregivers on relevant areas of functioning in
cerebral palsy
VERONICA SCHIARITI 1 | KAREN SAUVE 1 | ANNE F KLASSEN 2 | MAUREEN O'DONNELL 1 | ALARCOS CIEZA 3 |
^
LOUISE C M ASSE 4

1 Department of Pediatrics, University of British Columbia, Vancouver, BC; 2 Department of Pediatrics, McMaster University, Hamilton, ON, Canada. 3 International
Classification of Functioning, Disability and Health Research Branch in Co-Operation with the World Health Organization Collaborating Centre for the Family of
International Classifications in Germany, German Institute of Medical Documentation and Information, Nottwil, Switzerland. 4 School of Population and Public Health,
University of British Columbia, Vancouver, BC, Canada.
Correspondence to Veronica Schiariti, Department of Pediatrics, University of British Columbia, Room F509, 4480 Oak Street, Vancouver, BC V6H 3V4, Canada. E-mail: vschiariti@cw.bc.ca.

PUBLICATION DATA AIMS In the context of the development of the International Classification of Functioning,
Accepted for publication 17th February Disability and Health (ICF) Core Sets for children and adolescents with cerebral palsy (CP), we
2014. investigated the strengths and limitations in functioning important to children with CP,
Published online 29th April 2014. through either child self-reports or caregiver proxy reports, using components of the
International Classification of Functioning, Disability and Health for Children and Youth (ICF-
ABBREVIATIONS CY).
ICF-CY International Classification of METHOD We conducted semi-structured interviews with 10 children with CP (children self-
Functioning, Disability and reporting), 10 caregivers of children self-reporting (10 child–caregiver dyads), and 12
Health, Children and Youth ver- caregivers of children not self-reporting. Mean age 10y 6mo, range 4–16y. A convenience
sion sample was recruited representing Gross Motor Function Classification System (GMFCS)
QOL Quality of life levels I to V. Interviews were audio-taped and the content covered all of the relevant ICF-CY
components. The interviews were then transcribed verbatim and coded in N-Vivo 10 using
the ICF-CY coding system.
RESULTS We identified 1956 themes that linked to 175 ICF-CY categories. Most of the themes
were represented by the ICF-CY components activities and participation and environmental
factors. The children interviewed discussed issues related to mobility, self-care, and
recreation and leisure, whereas the caregivers focused more on physical limitations and on
the environmental factors associated with everyday activities.
INTERPRETATION The children and their caregivers described many of the same areas of
functioning but provided unique perspectives. Children talked more frequently about their
abilities with CP, whereas the caregivers interviewed talked more about their concern over
the limitations and broader issues facing their child. The findings highlight the need to
explore the perspectives of both the child and the caregiver when characterizing the
functional profile of children with CP.

Cerebral palsy (CP) is a lifelong disorder that affects the
development of movement and posture, causing limitation
of activity.1 Owing to the complex clinical presentation of
CP, children with CP require multiple resources (health,
educational, social) on a daily basis. Health care profes-
sionals, educators, and researchers are striving to develop
new research-based ways to improve the health and overall
well-being of children with CP and their families. How-
ever, health and well-being are difficult concepts to opera-
tionalize and study. The International Classification of
Functioning, Disability and Health (ICF)2 and its paediat-
ric version, the ICF for Children and Youth (ICF-CY)3
provide a comprehensive description of the components of
health. The ICF describes health in terms of ‘functioning’,
specifically what a person can or cannot do on a daily
basis.4 However, a major impediment in adopting the ICF
framework in daily practice is its comprehensiveness as
the ICF-CY contains 1685 categories; therefore, ICF-CY-
based tools are needed to facilitate its application in the
case of CP.
In previous literature, the predominant approach taken
in researching the experience of children or understanding
their functioning was grounded in ‘research on’ the child
rather than ‘research with’ them,5 ignoring the views of
children as active agents in matters pertaining to their own
health and well-being. The increased interest in involving
children and their primary caregivers in research has been
influenced by the recognition of children’s rights6 and

© 2014 Mac Keith Press DOI: 10.1111/dmcn.12472 853

changes in research approaches towards children, involving
them as active agents in the research.7 The ICF-CY3
incorporates the United Nations Convention on the Rights
of Persons with Disabilities8 and the United Nations Gen-
eral Assembly Convention on the Rights of the Child.6 To
date, few studies have included interviews with children
with CP.9–12 Those that have highlight the importance of
taking into consideration what children with CP value
most in their quality of life (QOL) and social participa-
tion.10,11 However, to our knowledge, no qualitative study
has applied the ICF-CY coding system to CP to describe
functioning from the perspective of the child. The exami-
nation of such an approach would guide the planning of
child-centred functional interventions.
To improve the utility of the ICF framework in clinical
and research settings, ICF-based tools such as the ICF
Core Sets have been developed for some adult conditions,4
although, to date, no ICF Core Sets have been developed
for children and adolescents. The ICF Core Sets standard-
ize what should be measured and reported on for a given
population, therefore facilitating the use of a classification
system. Our research team is leading the development of
the ICF Core Sets for children and adolescents with CP.
Following the methodology endorsed by the World Health
Organization for ICF Core Sets development,4 we are
required to conduct four independent studies reflecting the
perspectives of professionals,13 researchers,14 clinical opin-
ion, and children and caregivers on relevant areas of func-
tioning to gather evidence to support the selection of the
categories. This paper presents the results of our qualita-
tive study examining the perspectives of children and care-
givers. In the context of the development of the ICF Core
Sets for children and adolescents with CP, the objectives
of this study were to (1) identify strengths and limitations
in functioning important to children with CP through
either child self-reports or caregiver proxy reports,
(2) describe contextual factors that positively and negatively
influence functioning, (3) compare concordance and discor-
dance between child self-reports and caregiver proxy
reports, and (4) describe these characteristics using the
ICF-CY coding system.
METHOD
Study design
We conducted a qualitative study using semi-structured
interviews with children with CP and their caregivers. We
examined relevant areas of functioning through child self-
reports and caregiver proxy reports, using the ICF-CY
framework. This study was approved by the University of
British Columbia Research Ethics Board.
Study population
A total of 32 interviews were conducted with 10 child–
caregiver dyads (the child and his or her caregiver). A child
participating in individual interviews had to meet the fol-
lowing inclusion criteria: diagnosis of CP made by a health
professional; aged 8 to 18 years; and able to communicate
854 Developmental Medicine & Child Neurology 2014, 56: 853–861
What this paper adds
• Children with CP and their caregivers have discordant perspectives of func-
tioning.
• Children with CP embrace their abilities.
• Caregivers most value the acquisition of skills required for future indepen-
dence.
• It is important to consider clients’ opinions of their functioning.
• Environmental factors play an important role in everyday functioning.
effectively. We defined ‘children who could effectively
communicate’ as those children who could communicate
verbally or using assistive devices. A caregiver participating
in individual interviews had to meet the following inclusion
criteria: have a child with a diagnosis of CP made by a
health professional; and be the primary caregiver. In
addition, the caregivers of younger children (<8y) and the
caregivers of children aged 8 to 18 years who could not
effectively communicate were also interviewed (by proxy
report).
Data collection
Recruitment of participants was conducted at child devel-
opment and tertiary-level centres in British Columbia.
Occupational therapists and physiotherapists were asked to
refer potential participants and assessed the participants’
suitability to enter the study. Those who agreed to partici-
pate completed a telephone screen interview to review eli-
gibility criteria. All eligible participants were scheduled for
an in-person interview at a location convenient to the fam-
ily. The interviews lasted approximately 30 to 45 minutes.
Before each interview, a brief questionnaire gathering
socio-demographic and health information was adminis-
tered to the caregiver. A paediatric physiotherapist, with
many years of experience working with children with CP,
performed the individual interviews. Each individual inter-
view was digitally recorded and transcribed verbatim.
Participant’s information
The caregiver provided the following demographic infor-
mation: sex and age of the child, grade level, parental edu-
cation, and some health information about their child
(Gross Motor Function Classification System [GMFCS]
level, recent surgeries, and comorbidities).
Interview
The semi-structured interviews were based on the compo-
nents of the ICF-CY.3 The interviewer asked a series of
open-ended questions addressing the following five
domains: (1) body structures that cause some difficulty in
taking part in everyday life activities; (2) body functions,
which include physiological functions that may affect abil-
ity to perform different daily activities; (3) activities and par-
ticipation, which include abilities and limitations in
everyday life activities; (4) environmental factors, which
include the physical and social environment in which the
child lives; and, finally, (5) personal factors, which include
the personal characteristics of the child. Interviews that
were carried out with the children assessed the same
dimensions as their caregivers; however, the questions were
posed differently (interviews conducted with children
started with the personal factors to facilitate their engage-
ment in the interview, whereas interviews conducted with
caregivers started with body structures). Of the children self-
reporting, caregivers were present for the interviews in
seven out of 10 cases.
12 years 5 months (SD 2y 1mo), range 10 to 16 years and
that of children who were not self-reporting was 8 years
11 months (SD 3y 11mo) (range 4–16y). The majority of
children, both self-reporting and not self-reporting, were
male (n=8 in each case). The majority of caregivers were
female (n=19). The children were classified as GMFCS
levels I–V (Table I).

Data processing Relevant areas of functioning

Data processing was carried out by two health profession- We identified 1956 themes that were linked to 175 unique
als (VS, KS) following the ICF linking rules.15 Double ICF-CY categories: 107 (61%) of the categories were sec-
coding was conducted as follows: the first 10 transcripts ond level, 64 (37%) were third level, and only four (2%)
were double coded by both VS and KS, and then VS were fourth-level categories. Some themes (4%) were
coded all further transcripts, and discrepancies were coded as ‘not covered’ or ‘not definable’ (e.g. not covered:
resolved when identified. impact of CP on parents’ health). Of the 175 unique cate-
Data analysis consisted of line by line coding of data gories linked, 41% were identified as activities and participa-
using the ICF-CY as a framework. Specifically, themes tion, 32% as environmental factors, 17% as body functions,
were organized by ICF-CY components and subsequently and 10% as body structures. Although children and caregiv-
linked to the ICF-CY categories according to established ers mainly represented the components of activities and par-
linking rules.15 All themes were first assigned a letter ‘b’, ticipation and environmental factors, the pattern of answers
‘s’, ‘d’ or ‘e’, which refer to the components body functions, differed for each group interviewed.
body structures, activities and participation, and environmental The children talked more frequently about the activities
factors respectively. The component personal factor was iden- that they were able to do and what helped them in per-
tified as ‘pf’. Subsequently, a numerical code was assigned forming these activities. In contrast, the caregivers more
starting with the chapter number (one digit), followed by a often discussed their concerns about physical limitations
second- (two digits), third- (three digits), and fourth-level and environmental factors, including barriers to and facilita-
(four digits) code depending on the specificity of the tors of everyday activities.
themes. For example, the environmental factors component
contains the following categories: e1-products and technol-
ogy (first level); e115-products/technology for personal use
(second level); e1152-products/technology used for play Table I: Characteristics of children self-reporting and not self-reporting
(third level); and e11521-adapted products/technology for
Children Children not
play (fourth level). self-reportinga self-reporting
Characteristic (n=10) (n=12)
Sample size justification Age y:mo, mean (SD) 12y 5mo 8y 11mo
Participants were included in this qualitative study until (2y 1mo) (3y 11mo)
saturation and good representation of the sample were Males/Females n 8/2 8/4
Number of participants by GMFCS level, n
reached. Saturation was defined as the point during data I–III 7 3
collection when less than 5% of the second-level ICF-CY IV–V 3 9
categories were added. Data saturation was reached after Comorbidities, n
Intellectual disabilities 2 4
32 interviews. Learning or 3 5
behavioural disabilities
Analysis Hearing or vision 6 8
difficulties
Data were coded using the N-Vivo software, version 10 Epilepsy 0 5
(QSR International Pty Ltd, Doncaster, Vic., Australia). Surgery, 12mo before 5 7
Descriptive statistics were used to display the final list of the interview
Grade children attending, n
ICF-CY categories. The distribution of categories by par- Preschool/kindergarten 0 3
ticipants’ characteristics (child vs caregiver proxy) was School grade 1–10 10 9
made at the chapter level to facilitate the presentation of School grade 1–6 4 5
School grade 7–10 6 4
results. Caregiver characteristics
Caregivers’ level of
RESULTS education, n (%)
Post-secondary/non- 4 8
Participants’ characteristics university
Overall, 10 children with CP (children self-reporting), 10 Secondary/university 6 4
caregivers of children self-reporting (10 child–caregiver a
Caregivers of children self-reporting were also interviewed (10
dyads) and 12 caregivers of children not self-reporting child–caregiver dyads). GMFCS, Gross Motor Function Classifica-
were interviewed. Mean age of all child participants was tion System.

Qualitative Analysis on Functioning in CP Veronica Schiariti et al. 855

Table II: Distribution of categories of the International Classification of Functioning, Disability and Health for Children and Youth at the chapter level by
study participants

Participant interviewed

Children self-reporting Caregivers of children self-reporting Caregivers of children

(n=10), number of (child–caregiver dyads, n=10), not self-reporting (n=12),
categories reported number of categories reported number of categories reported

Body structures
s1-Structures of the nervous system 0 0 3
s2-The eye/ear-related structures 1 2 1
s4-Structures of the cardiovascular, 0 0 1
immunological/respiratory systems
s5-Structures related to 0 0 1
digestive, metabolic,
and endocrine systems
s7-Structures related to movement 23 25 41
Body functions
b1-Mental functions 2 6 4
b2-Sensory functions and pain 8 4 12
b3-Voice and speech functions 0 2 1
b4-Functions of the cardiovascular, 0 0 3
haematological/immunological/
respiratory
b5-Functions of the digestive, metabolic, 0 7 18
and endocrine systems
b6-Genitourinary and reproductive 0 0 1
b7-Neuromusculoskeletal and 8 13 19
movement-related functions
Activities and participation
d1-Learning/applying knowledge 14 6 6
d2-General tasks and demands 0 3 2
d3-Communication 5 2 18
d4-Mobility 57 78 91
d5-Self-care 41 47 65
d6-Domestic life 6 7 0
d7-Interpersonal relationships 2 8 8
d8-Major life areas 10 18 12
d9-Community, social, and civic life 53 38 40
Environmental factors
e1-Products and technology 46 107 176
e2-Natural environment 1 4 2
human-made changes
to environment
e3-Support and relationships 22 23 35
e4-Attitudes 12 23 29
e5-Services, systems, and policies 34 70 108

Table II shows coverage of the ICF-CY chapters
as described by the children and their caregivers; this
representation also differed between the two groups. The
most common aspects of functioning addressed by all partic-
ipants were d4-mobility; d5-self-care; d9-community, social
and civic life; and e1-products and technology. Within each
chapter, children and caregivers agreed on many ICF-CY
categories; however, each group provided unique categories
as well.
Body structures/body functions
As expected in the component body structures and body func-
tions, all participants mainly described the neuromusculo-
skeletal areas as relevant aspects of functioning.
Specifically, the most commonly described impaired body
structures were b750-structure of lower extremity, and
b7302-structure of the hand. Interestingly, some children
did not describe body structures clearly affected by CP, even
after further prompting for that information (Table III).
In the component body functions, b760-control of volun-
tary movements and b735-muscle tone were the most fre-
quently described areas of concern.
Activities and participation
Abilities
In general, the children indicated that they were able to
perform many activities, such as moving around with or
without equipment, dressing, washing themselves, and par-
ticipating in many social activities. Use of social media
(e.g. Facebook, Twitter, or e-mail) was frequently
described by the children (see Table III).
Caregivers agreed with the children in the assessment of
many aspects (e.g. mobility, self-care); however, according
to the caregivers, many of the skills were not performed by
the child at an age-appropriate level and some assistance
was necessary to complete the tasks (e.g. washing). Care-
givers also reported that the children needed more time to
achieve the activities on their own.

856 Developmental Medicine & Child Neurology 2014, 56: 853–861

Table III: Examples of quotes ordered by International Classification of Functioning, Disability and Health for Children and Youth components

Body structures – Can you tell me what parts of your body/child’s body give you/your child trouble, if any?
Boy (13–16y age rangea), Gross Motor Function Classification System (GMFCS) IV, using a talker
Youth: ‘. . . My right hand.’
His mother clarified: ‘. . .For him, his wheelchair is an extension of his body and that; his wheelchair makes it hard for him to do the
things he wants because of technology.’ . . .‘Because if it breaks or because the battery dies or that kind of thing . . .’
. . . Interviewer (I): Like you were saying, he sees himself as being no different.
Mom: ‘Yes, he fits right in and that’s why he says, when you ask him for body-wise, the only thing he sees a problem with is his right
hand. Not anything else.’
Boy (9–12y age range), GMFCS II
Youth: ‘Probably my knees and hips.’
Caregiver, girl (4–8y age range), GMFCS III
Mom: ‘Mostly lower legs, definitely ankles’
Caregiver, girl (13–16y age range), GMFCS III
Grandma: ‘I think her back and her hips.’
Body functions – Tell me about what parts of your body/child’s body make it hard to do the things you/your child want/s, if any?
Girl (13–16y age range), GMFCS V
Youth: ‘. . .Try my body relax.’
I: It’s hard to make your body relax. Anything else?
Youth: ‘No.’
Girl (13–16y age range), GMFCS III
Youth: ‘. . .I get this pain in my side that I always have, that I’ve had since I was little that I just can’t walk long distances. It seems to go
away sometimes. I don’t know if it’s just, like usually when I’m with friends and I’m distracted I used to sometimes don’t get it. But I
don’t know if that’s just my brain saying you’re distracted, it still hurts but you can’t feel it or anything. I don’t know.’
Caregiver, boy (9–12y age range), GMFCS I
Mom: ‘. . .The riding a bicycle and the swimming would be the two because there’s so much more going on. There’s your environment,
then you’ve got to deal with all different body parts and they all have to work together and tell them and coordinate together.’
Activities and participation – Tell me about things you/your child do/es every day. What activities are you/your child able to do?
Boy (13–16y age range), GMFCS IV
Youth: (working on talker) ‘I: (reading from talker): Your computer. So you can use your computer, you can watch TV, you can go
outside with friends.’
Girl (13–16y age range), GMFCS III
Youth: ‘. . . I use the bus all the time. . .recently I’ve been using my crutches on the bus and it’s pretty easy. I just, like we obviously put
down the ramp even if it’s just, they usually do. And then I just sit down and get up once it’s fully stopped. And it’s fine.’
Boy (13–16y age range), GMFCS III
Youth: ‘. . .I like kinda competitive things, like I was in a baseball, um, it was like an adaptive league, I think it was called, um like it was
a team for disabled, and I don’t know, I just didn’t really like it because it wasn’t competitive enough for me.’
Boy (13–16y age range), GMFCS III
Youth: ‘. . .I usually eat with my fingers when we’re having chicken.’
I: . . . eating and drinking though?, is that pretty easy for you or . . .
Youth: ‘Yah, that’s pretty easy.’
Caregiver, boy (9–12y age range), GMFCS I
Mom: ‘. . ..self-care activities like, dressing, bathing, brushing. . . Everything like that he’s really good.’
Caregiver, girl (4–6y age range), GMFCS III
Mom: ‘She can relatively bathe by herself. Like, we can leave her unattended sort of thing but not with washing her hair and stuff but I
think that’s kinda typical for her age.’
Boy (13–16y age range), GMFCS III
Mom: ‘Dressing is usually fine. He can’t put on his socks or his shoes by himself. Um, but he can get underwear and pants and shirts
and he can do up most buttons.’
Activities and participation – Tell me about things you/your child do/es every day, What activities are more difficult for you/your child to
do?
Girl (13–16y age range), GMFCS III
Youth: ‘. . . I don’t like cutting things. It’s just, I don’t have very good cutting skills. . . Um, but no I don’t cut food but I do, like I did the
grocery shopping. So I did my first solo grocery shop a few weeks ago. . .’
Boy (13–16y age range), GMFCS III
Youth: ‘Yah, like walking on snow or like rocks or. . . that’s hard but like, walking on grass or pavement, it’s just like the same.’
Caregiver, girl (4–8y age range), GMFCS II
Mom: ‘But the first thing, she really has difficulties using the washroom. So now, she started using the washroom. She can go by
herself. But she needs supports at the side because standing sometimes kind of tricky pushing her clothes up.’
Caregiver, boy (4–8y age range), GMFCS II
Mom: ‘. . .Anything that requires standing still and not, and not, unsupported is really hard, yah. He’s not putting his pants on and he’s
not. . . like, the whole, the bathroom thing is only happening when someone’s right there taking the pants off, taking the pull up off, and
sitting him on the toilet.’
Caregiver, boy (13–16y age range), GMFCS IV
Mom: ‘Well, the amount of time it takes him to write out one paragraph is an hour. And so, but yet he needs to keep up. And so it’s
been some anxiety with Grade 9, how’s he going to keep up with this work load?’
Environmental factors – Tell me about your/his family, school, and neighbourhood. What things help you/your child do the activities?
Girl (13–16y age range), GMFCS III
Youth: ‘. . . Yah, I’ve grown up with them (crutches), so I’m used to them. And everyone’s like, ‘well if you want to do this you gotta get
rid of your crutches’. I’m like, ‘I grew up on them, they’re not weird for me . . . I’m not that eager to get, well, I am eager to get off them
but it’s not weird for me to have them because it. . . had them for my whole life. . . So I’m not really eager to get off the things that I’ve
relied on for 16, 15 years. . .’

Qualitative Analysis on Functioning in CP Veronica Schiariti et al. 857

Table III: Continued

Girl (13–16y age range), GMFCS III

Youth: ‘. . .I hang out more with friends act like I’m not different. Like, they treat me like I’m the exact same. They treat me. . . you know,
they just don’t be like, ‘oh she has a disability, we have to walk slow’. They just do it.’
Caregiver, girl (4–8y age range), GMFCS II
Mom: ‘Therapists, and people really take these kids positively. And that helps them to build their self-confidence. . . Instead of saying
“Oh, oh, don’t do this, you won’t be able to do this. . .. Oh you are great, you can do this”.’
Caregiver, boy (9–12y age range), GMFCS I
Mom: ‘He can obviously write faster than he can, than he can type. And that I think has both to do with because we don’t do a whole
lot on the computer. . . . So, but his teacher is awesome because they’ll get their lab time or they’ve got their Macs [computers] and
they know what they’ve been working on. Cause she has everyone, she has them, this year all of their assignments, their bigger
projects are to be typed. So whatever they’ll start, she’ll then save and then e-mail to me.’
Environmental factors – Tell me about your/his family, school, and neighbourhood, What things make the activities hard or difficult?
Boy (13–16y age range), GMFCS III
Youth: ‘Oh yah, movie theatres are hard. Like, like getting upstairs in public cause you have to walk, you can’t really crawl upstairs.
Getting upstairs in public’s kinda difficult. But there’s not a whole lot of difficult things.’
Youth: ‘And bigger doorways (at school).’
Boy (13–16y age range), GMFCS III
Youth: ‘Um, splints are helpful sometimes. Like for riding a bike, they’re not very helpful cause they’re like heavier.’
Caregiver, boy (13–16y age range), GMFCS IV
Mom: ‘. . . you have to almost talk to another parent with a child with disabilities to find out about more programmes. Rather than
having, like a case worker to tell you, “Listen, you can get this and that”.’
Caregiver, boy (13–16y age range), GMFCS III
Mom: ‘I think we’ve found out very little through our therapist. It’s always kinda just been surfing the internet or, talking to people.
Getting to know people and passing the information along.’
Caregiver, boy (9–12y age range), GMFCS II
Mom: ‘You know what’s sometimes frustrating is that there’s all kinds of programs out there. But the one group is so focused on the
vision and the other group is so focused on the physical that, it’s, each of them miss a piece.’
Caregiver, boy (13–16y age range), GMFCS III
Mom: ‘. . . Wish there was more kinda sports things. I know there’s a sledge hockey group but it’s not too close. It’d be nice to see more
of those kinda opportunities for them.’
Caregiver, boy (4–8y age range), GMFCS IV
Mom: ‘. . .When they are first diagnosed, we have to wait at least one year to get one [service]. Like physio, or like speech therapist.
Once you wait one year or more, you start to get more and more things, right. But first, when you start, you try to get more
information about his condition, takes too long to get something!’
Caregiver, boy (13–16y age range), GMFCS III
Mom: ‘Um, services. . . I found it odd that when he turned five, that the funding for like physio was cut off. . . . He could really have
benefited a lot more to have more services now than he did when he was two and three.’
Personal factors – How would you describe yourself/your child?
Boy (9–12y age range), GMFCS II
Youth: ‘. . .Um, well when I was a baby I had cataracts and CP. Is that OK if I just call it CP? . . . I don’t really play at the park because I
just want to go home and watch my iPad because I’m more of an inside guy. Um, but, um. . . that’s basically it.’
Caregivers, boy (9–12y age range), GMFCS II
Dad: ‘. . .sometimes it’s hard to motivate him. Yah. It depends what it is, right? Like, if you have like, you can go play a game over there
on the computer, oh yah, then he’s right there. But if it’s something else. . .’
Caregiver, boy (13–16y age range), GMFCS III
Mom: ‘Very motivated. Like, the doctors have always said that through the years, half of his battles, he’ll win just for motivation and
trying.’
Caregiver, boy (13–16y age range), GMFCS IV
Mom: ‘First of all, I do not know how to answer the question because compared to a typical child or compared to? It’s the comparison.
. . . I mean Johna has cerebral palsy and I accept that . . .. But, I, I just see him as “This is the package” and this is what comes with it.
So, he’s got uh, athetoid CP. . .’
a
Pseudonyms and age ranges are reported to protect the confidentiality of the participants.

Limitations wheelchairs, were the main facilitators. They also acknowl-

Certain aspects of d4-mobility (e.g. walking on different
surfaces), including fine motor skills, were frequently indi-
cated by all participants as being a challenge for the child.
In addition, d5-self-care (e.g. dressing/doing buttons), and
d1-learning/applying knowledge (e.g. writing), were com-
monly described as areas of concern.
Environmental factors
Facilitators
Many environmental factors were described as positively
influencing functioning, such as e1-products and technol-
ogy, and e5-services, systems, and policies. Children indi-
cated that equipment aiding mobility, such as crutches or
edged the love and support of their immediate family
members as well as the attitudes of their peers who treat
them as equals. Some caregivers described access to ser-
vices, support at school (e5), and professional attitudes (e4)
as facilitators. However, not every family had the same
positive experience and some listed the same factors as bar-
riers to functioning (Table III).
Barriers
Aspects related to access to information (e.g. funding pro-
grammes, adapted sports) (e5), availability of recreational
programmes (e5), attitudes (e4), access to health services
(e5), and design of public and private buildings (e1) were

858 Developmental Medicine & Child Neurology 2014, 56: 853–861

some of factors the most frequently described as being a
hindrance (Table III).
Personal factors
Personal characteristics and motivating factors were the
themes that were most commonly addressed (Table III).
Family-related aspects
Caregivers stated that there were other factors that
ultimately would influence their children’s functioning as
follows.
Caregivers’ health
Some caregivers stated that they worried about maintaining
their own health, as their child is dependent on them for
daily activities, and that looking after their children had
affected their own physical health. They also worried that,
as they grew older, they would be unable to continue
assisting their child.
Family-social participation
Some caregivers described that, because of difficulties mov-
ing around in relatives’ homes or because of the attitudes of
extended family members (resulting in stress relating to the
child’s condition), they limited their social interactions with
their families, even at regular family gatherings such as at
Christmas. Unfortunately, these barriers reduce the oppor-
tunities of the children to socialize with their own family.
Overprotection
Some caregivers indicated that in order to keep their child
safe they limited some activities; they acknowledged that it
is hard to find a balance between safety and overprotection
and that their child might be able to do more than they
are allowing them to.
Overall, the most common second- to fourth-level ICF-
CY categories described by all of the participants were
d510-washing oneself; d9201-sports; d440-fine hand use;
d540-dressing; and s750-structures of lower extremity
(rank centile ≥98th centile; see Appendix S1, online sup-
porting information).
DISCUSSION
Our study identified the relevant areas of functioning
among children with CP based on the perspective of the
children and their caregivers. The most common issues
raised by participants were related to mobility, self-care,
and recreation and leisure. The main contextual factors
identified in the study were related to products and tech-
nology and to the services, systems, and policies related to
health, education, and social services. A comprehensive list
of categories covering all ICF-CY components was identi-
fied and can provide key areas for professionals to consider
when assessing the population of children with CP. Fur-
thermore, our findings provide another piece of evidence
towards the development of the ICF Core Sets for children
and adolescents with CP.
In general, children had a positive view of their abilities
and described their strengths and facilitating factors. Con-
versely, caregivers focused on the challenges their children
encountered in their everyday activities. Caregivers
expressed a number of hindering factors that negatively
affected their child’s performance every day. The discor-
dance between the perspective of the children and that of
their caregivers may be due, firstly, to the developmental
stage of the child, resulting in a different expectation of
ability from their caregiver. The majority of the children
focused more on what is immediately relevant to them,
their current abilities and supportive factors. In contrast,
caregivers often reported being preoccupied by the future
for their child, mainly how well their child would integrate
into the community and become an independent adult.
Secondly, the experience of growing up and living with a
physical disability may affect a child’s reporting. Children
demonstrated an acceptance of their condition which influ-
enced their perspective on functioning. Many children sta-
ted that ‘they were born with CP’ and that they had
adapted and coped with the challenges; therefore, they did
not see themselves as different from other children.
The discordance between the perspectives of children
and their caregivers has been shown in other stud-
ies.11,16,17 Studies on aspects of well-being and QOL have
found that caregivers do not necessarily agree with their
child’s perceptions on QOL, as caregivers rated their chil-
dren’s QOL lower than did the children themselves. It is
important to note that, although ‘functioning’ may have
an impact on QOL, they are different concepts. Func-
tional status focuses on the performance of specific tasks
(e.g. activity of daily living) and QOL focuses on ‘how a
child feels’. In keeping with the positive perspectives
manifested by children interviewed in this study, Saigal
et al.18,19 have reported that people with significant
functional problems do not necessarily report their QOL
as being low, showing that the perception of their overall
well-being does not directly correlate with their functional
challenges.
We have shown that it is important to consider the per-
spectives of both children and their caregivers on relevant
areas of functioning in this population. Our findings can
help guide the selection of outcome measures that align
with the ICF-CY categories identified in this study, for
individual or programme evaluation. In addition, the list of
unique ICF-CY categories can guide the setting of goals
and the eligibility constraints for health or educational ser-
vices. In keeping with the literature, we also identified the
negative impact that caring for a child with CP can have
on the caregiver’s health,20,21 showing the importance of
supporting caregivers in order to meet their needs and
enhance their own well-being.
Our results show that the perspective of the client on rel-
evant areas of functioning differed from the perspective of
the professional,13 as the current representation of ICF-CY
categories and components differs from those identified in
this study. Children and caregivers highlighted aspects that
Qualitative Analysis on Functioning in CP Veronica Schiariti et al. 859
were mainly related to the components activities and partici-
pation and environmental factors, in contrast to professionals,
who have mainly focused on activities and participation and
body functions. This discrepancy emphasizes the importance
of engaging with children and their caregivers when setting
goals and planning interventions.
The findings of this study should be interpreted in light
of its limitations. First, the sample was drawn from com-
munity and clinical settings in British Columbia, Canada.
Although the province of British Columbia includes a mul-
ticultural population, our findings may not represent the
perspectives of the international CP community. Second,
although our study population represented all GMFCS lev-
els, GMFCS levels III–V were more prevalent and this
could have influenced our results. Third, despite our
efforts, the number of male children was higher than the
number of female children interviewed. Perspectives of
functioning may differ by sex and we did not compare any
of the findings based on sex. Fourth, during the interviews
of two children, the caregivers were actively involved in
order to clarify their responses and help with equipment,
which could have influenced the children’s answers.
Finally, the number of female caregivers was higher than
male caregivers; our results might have differed if the per-
spectives of more male caregivers had been examined.
In conclusion, this qualitative study provides evidence
that children with CP and their caregivers have different
perspectives in terms of identifying the issues that limit or
facilitate the functioning of children with CP. The children
highlighted their abilities and factors that facilitate their
participation in daily activities. In contrast, caregivers pro-
vided a more comprehensive perspective in terms of the
ICF-CY components, including areas of impairments in
body structure/functions, limitations in activity of everyday
living, and the role of environmental factors, showing the
need to consider both perspectives when planning func-
tional child-centred interventions and services. Impor-
tantly, this study demonstrates the need to include the
perspectives of children and their caregivers when selecting
the final ICF-CY categories for the ICF Core Sets for chil-
dren and adolescents with CP.
A CK N O W L E D G E M E N T S
We express our thanks to all the children and their caregivers
who participated in this study for their invaluable contribution.
We also would like to thank all the professionals who helped
recruit participants for the study; special thanks to Stacey Miller
and Kim Hesketh at British Columbia Children’s Hospital, and
the occupational and physiotherapists working at The Centre for
Child Development and the Sunny Hill Health Centre for
Children.
Veronica Schiariti was funded by a Canadian Institutes of
Health Research (CIHR) Doctoral Research Award and salary
support from the Sunny Hill Foundation for Children. Louise C
M^asse received salary support from the Child and Family
Research Institute and the Sunny Hill Foundation. Anne Klassen
holds a CIHR mid-career award. Veronica Schiariti received an
American Academy for Cerebral Palsy and Developmental Medi-
cine (AACPDM) student scholarship award to present the results
of this qualitative study at the 67th Annual AACPDM meeting in
Milwaukee, United States, 2013.
CONFLICT OF INTEREST
The authors have stated that they had no interests that
might be perceived as posing a conflict or bias.
SUPPORTING INFORMATION
The following additional material may be found online:
Appendix S1. Most frequently covered ICF-CY categories by
participants 80 ≥rank percentile.

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