Measuring participation
gence of new issues in the area of participation of children
in children with
disabilities using
the Assessment of
Life Habits
Luc Noreau* PhD, Rehabilitation Department, Faculty of
Medicine, Laval University and Center for Interdisciplinary
Research in Rehabilitation and Social Integration, Quebec
City;
Céline Lepage MSc PT;
Lucie Boissiere MSc OT;
Roger Picard MA Psych;
Patrick Fougeyrollas PhD, Rehabilitation Institute of
Quebec, Quebec City;
Jean Mathieu MD MSc, Neuromuscular Clinic, Carrefour de
santé de Jonquière, Jonquière;
Gilbert Desmarais PhD, Centre de réadaptation Marie Enfant
de l’Hôpital Sainte-Justine;
Line Nadeau PhD, Rehabilitation Department, Laval
University, Quebec City, Quebec, Canada.
*Correspondence to first author at CIRRIS, 525 Boulevard
Hamel, Québec, QC G1M 2S8, Canada.
E-mail: Luc.Noreau@rea.ulaval.ca
The objectives of this study were: (1) to examine the
psychometric properties of the Assessment of Life Habits
(LIFE-H) for children; and (2) to draw a profile of the level of
participation among children of 5 to 13 years of age with various
impairments. The research team adapted the adult version of
the LIFE-H in order to render it more appropriate for the daily
life experiences of children. Content validity was verified by an
expert panel of 29 people, made up of parents, paediatric
clinicians, and researchers. Reliability and construct validity of
the LIFE-H for children (interview-administered form) was
tested during an experiment that comprised three sessions of
interviews with a group of 94 parents of children with
disabilities (36 males, 58 females; mean age 8y 10mo
[SD 2y 6 mo]; diagnostic groups: cerebral palsy,
myelomeningocoele, sensory-motor neuropathy, traumatic
brain injury, and developmental delay). Overall, the LIFE-H
showed high intrarater reliability with intraclass correlation
coefficient values of 0.78 or higher for 10 out of 11 categories.
The correlations between the LIFE-H and the tools used in
pediatric rehabilitation varied, and categories with similar
constructs generally led to higher correlations. The
psychometric properties of the LIFE-H are appropriate and its
content allows a complete description of participation among
children with disabilities.
See end of paper for list of abbreviations.
666 Developmental Medicine & Child Neurology 2007, 49: 666–671
Recently, paediatric rehabilitation has experienced the emer-
with disabilities.1,2 Specifically, a growing interest has emerged
to move beyond improvement of body functions, capabilities,
and functional abilities of such children to include the priori-
tization of social participation as one of the major issues for
rehabilitation services.3 There is an increasing understand-
ing of the importance of ensuring that children can partici-
pate actively in the life domains that they or their parents
value, and of the need to provide services that will, ultimately,
enhance participation in everyday activities.4,5 Even though a
few reports on participation exist in the literature,5–7 there is
a lack of measures that address the overall construct of par-
ticipation that includes various dimensions of a child’s life.8
This concept is relatively new and emerged mainly after the
publication of the World Health Organization’s International
Classification of Functioning, Disability and Health (ICF).9
In the early 1990s, the Disability Creation Process (DCP),10,11
an explanatory model of the consequences of disease, trau-
ma, and other disorders, operationalized social participation
via the concept of life habits, which it defined as ‘daily activi-
ties and social roles that ensure the survival and develop-
ment of a person in society’. A measure called the Assessment
of Life Habits (LIFE-H) was developed from that construct to
assess the quality of participation in the 12 dimensions of the
DCP.10 Methodological studies were carried out to test the
psychometric properties of the general version of the LIFE-
H,12–14 which has been used in studies with adults with various
functional limitations.15–17 Moreover, previous studies on the
participation profile of children with cerebral palsy (CP)18,19
underscored the need to develop a version appropriate for
and suitable to the specific aspects of children’s lives.
The LIFE-H for children was designed to meet the need for
a reliable and valid instrument to assess the social participa-
tion of children with disabilities from 5 to 13 years of age,
regardless of the type of underlying impairment. The modifi-
cations made to the original measure necessitated a re-exam-
ination of the psychometric properties of the measure, and
the LIFE-H for children scores were compared with other
instruments that measure related concepts. We hypothe-
sized that dimensions of instruments measuring similar con-
structs would present high correlations (i.e. mobility vs
locomotion, communication vs social function) and con-
versely, dimensions that are not supposed to be strongly
associated (i.e. daily activities vs social roles) should present
lower correlations. Consequently, the study objectives were
to establish the psychometric properties of the LIFE-H for
children (reliability and construct validity) and to draw a pro-
file of participation of children with various impairments.
Method
CONSTRUCTION OF THE LIFE - H FOR CHILDREN
Revisions of the LIFE-H resulted in the removal and addition
of some items from the general version as well as the adapta-
tion of examples and instructions to render them more
appropriate to a child’s life context. The LIFE-H scale was
based on two concepts: the level of difficulty when perform-
ing a life habit and the type of assistance required (assistive
device, adaptation and/or human assistance). Given that
human assistance is considered as ‘normal’ for 5- to 13- year-
old children to perform many life habits, the use of this con-
cept had to be adapted in the scale. Thus, the concept of
additional human assistance is considered, by the child, as
help exceeding the assistance a peer of the same age would
usually require (e.g. the assistance that a caregiver gives a
child because they have functional limitations).
Two versions of the instrument were developed, a short
version (64 items) and a long version (197 items). Both ver-
sions use an item score ranging from 0 to 9, developed by the
combination of the two concepts of the scale (degree of diffi-
culty and types of required assistance), where 0 indicates
total impairment (meaning that the activity or social role is
not accomplished or achieved) and 9 indicates optimal social
participation (meaning the activity or social role is per-
formed without difficulty and without assistance). In order
to allow for the variable number of items in each category,
and the number of ‘non-applicable’ items for the respon-
dent, a transformation of scores (on a 0–10 scale) was used to
give similar weighting to each category of life habits. The
measure also comprises a second scale that evaluates the
individual’s level of satisfaction with the accomplishment of
life habits. This score varies from 1 (very unsatisfied) to 5
(very satisfied). For the purpose of this paper, only the psy-
chometric properties of the category scores (short version)
are presented.
CONTENT VALIDITY PROCESS
Content validity was established with the help of an expert
panel of 29 people, comprising parents of children with
functional limitations (n=11), experienced paediatric clini-
cians (n=15), and researchers (n=3). The panel was asked
to review the content of the LIFE-H for its overall relevance
for children from 5 to 13 years old. They were also asked to
assess the comprehensiveness and clarity of the wording of
the measure.
an initial administration of the three instruments (session 1)
followed by a second administration of the LIFE-H for chil-
dren (session 2). A second therapist met the parents to com-
plete the third administration of the LIFE-H for children.
STATISTICAL ANALYSES
For content validity, the responses, feedback, and comments
from the panel of experts were analyzed quantitatively and qual-
itatively by the research team. Then, a meeting with the panel
allowed the research team to reach a consensus with respect
to what additional modifications should be performed.
The intra- and interrater reliability of the LIFE-H data were
estimated for each category of life habits, for daily activity,
and for social role dimensions, using intraclass correlation
coefficients (ICC). The Bland and Altman technique22,23 was
used to calculate systematic bias (d), which corresponds to
the mean of the differences between two observations. The
closer the bias is to zero, the better the agreement between
observations. For each ICC and d value, the 95% confidence
interval was calculated in order to take sampling variation
into account. The construct validity (convergent and diver-
gent) was assessed by showing correlations (Pearson’s corre-
lation coefficients) between 11 categories of the LIFE-H for
children, three domains of the PEDI, and six domains of the
WeeFIM. Based on a 5% alpha error and a statistical power of
90%, a sample size of 80 participants would allow the detec-
tion of a correlation of 0.35 or over as statistically significant
(bilateral test).24
Finally, profiles were drawn using graphical methods in
order to illustrate variations between dimensions of social
participation and among different diagnostic groups. Sig-
nificant differences were determined by a one-way analysis
of variance.

RELIABILITY AND CONSTRUCT VALIDITY TESTING Results

Reliability of the LIFE-H for children was tested during an CONTENT VALIDITY
experiment that comprised three sessions of interviews using The panel of experts agreed that the instructions were easy to
the instrument (short version) with a group of parents rais- understand but they suggested that the meaning of some gen-
ing children with disabilities. The convergent and divergent eral terms (e.g. life habit, social role) be specified and that fur-
validity of the LIFE-H was tested by comparing its scores with ther explanation be provided for concepts in the measure-
those of two instruments administered during the first test- ment scale (e.g. ‘carried out by a proxy’, ‘additional human
ing session: the Pediatric Evaluation of Disability Inventory
(PEDI)20 and the Functional Independence Measure for Child-
ren (WeeFIM).21
Table I: Description of participants
RECRUITMENT AND DATA COLLECTION PROCEDURES
The research protocol was approved by the Research Ethics Cerebral palsy Other diagnosis
Committee of the three rehabilitation centers. For the relia- (n=48) (n=46)
bility and construct validity procedures, recruitment was car- n (%) n (%)
ried out with parents whose children had received therapy in
Sex
clinical settings and who corresponded to one of the five Female 29 (60.4) 29 (63.0)
diagnostic groups (CP, myelomeningocele [MMC], sensory- Male 19 (39.6) 17 (37.0)
motor neuropathy, traumatic brain injury, and developmental Other diagnosis
delay). Before parents consented to participating in the study Myelomeningocele – 15 (32.6)
they were provided with information regarding the study Sensory-motor neuropathy – 12 (26.1)
and invited to sign an informed consent form. Characteristics Traumatic brain injury – 14 (30.4)
of the overall sample are presented in Table I. Developmental delay – 5 (10.9)
Data collection was carried out by research therapists who City of residence
received training in how to administer the instruments. They Quebec 15 (31.3) 15 (31.8)
Montreal 15 (31.3) 15 (36.4)
completed interviews with the parents within an interval of
Jonquière 18 (37.4) 16 (31.8)
10 to 14 days between testing sessions. The first two sessions Age, mean (SD) y:m 8:10 (2:4) 8:11 (2:8)
were conducted by the same research therapist and included

Measuring Participation in Children with Disabilities using LIFE-H Luc Noreau et al. 667
assistance’). Most experts (67–90%, depending on the dimen-
sion) judged the representativeness of the items as adequate to
cover the different dimensions of social participation. Sur-
prisingly, a higher proportion of parents supported the repre-
sentativeness of some dimensions (e.g. mobility, community
life, communication) compared with other panel members.
The opposite was true for the education and recreation dimen-
sions where a slightly lower proportion of parents indicated
adequate representativeness of items. The degree of clarity and
comprehensiveness of the items was also judged as satisfactory
for most of the participation dimensions. In spite of this overall
agreement, the parents still differed from the other panel mem-
bers with more than 90% of them indicating that the item word-
ing was easy to understand.
RELIABILITY
Overall, the LIFE-H total and category scores showed high
intrarater reliability with ICC values of 0.78 or higher for 10
of the 11 categories (Table II). The lowest ICC (0.58) was
obtained for the ‘interpersonal relationship’ category. This
low score is probably due to a lack of variability in the data.
More specifically, 75% of the children obtained a score of 8
out of 10 or higher, thus suggesting no, or only slight, partici-
pation restrictions. Moreover, a close inspection of the data
suggested that the lower ICC in ‘Community life’ might be
attributable to the small number of items in this category
(n=2) related to participation in community groups, clubs,
associations, or spiritual activities. Overall, the aforementioned
items were usually not accomplished (score of ‘0’) or are

Table II: Intra- and interrater reliability of 11 dimensions of the Assessment of Life Habits for all participants as measured by
intraclass correlation coefficients (ICC)

Dimensions Intrarater (n= 91)a Interrater (n= 80)a

ICCb 95% CI dc 95% CI ICC 95% CI d 95% CI

Daily activities
Communication 0.95 0.93– 0.97 –0.04 –0.22 to 0.15 0.91 0.87– 0.94 0.08 –0.18 to 0.35
Personal care 0.94 0.91– 0.96 –0.16 –0.34 to 0.03 0.92 0.88– 0.95 0.16 –0.06 to 0.39
Housing 0.93 0.89– 0.95 –0.28 –0.48 to 0.07 0.93 0.89– 0.96 0.11 –0.11 to 0.33
Mobility 0.91 0.86– 0.94 –0.33 –0.55 to 0.11 0.88 0.81–0.92 0.12 –0.16 to 0.40
Nutrition 0.86 0.80– 0.91 –0.29 –0.56 to 0.01 0.82 0.74– 0.88 0.01 –0.35 to 0.33
Fitness 0.83 0.75– 0.88 –0.04 –0.29 to 0.21 0.80 0.72– 0.87 0.03 –0.25 to 0.31
Social roles
Recreation 0.92 0.88– 0.95 0.14 –0.09 to 0.37 0.87 0.80– 0.91 0.07 –0.23 to 0.38
Responsibility 0.90 0.85– 0.93 0.04 –0.31 to 0.23 0.91 0.86– 0.94 –0.07 –0.33 to 0.19
Education 0.90 0.86– 0.94 0.06 –0.15 to 0.27 0.82 0.73– 0.88 0.15 –0.16 to 0.47
Community life (n=60–66)d 0.78 0.66– 0.86 0.42 –0.20 to 1.03 0.78 0.67– 0.87 –0.01 –0.64 to 0.63
Interpersonal relationships 0.58 0.42–0.70 –0.09 –0.30 to 0.12 0.63 0.48– 0.74 0.16 0.07 to 0.40
aRespectively, three and 14 participants were excluded of intra- and interrater analyses due to incomplete data at the second or third

measurement time. bPresented by decreasing order of ICC values (intrarater reliability). cd, Bland and Altman Systematic Bias.22,23 dReduced
number of participants in dimension ‘Community life’ (n=60–66) is due to items (i.e. participation in community groups or religious
activities) that were not applicable for several children and no score was computed for children in this category. CI, confidence interval.

Table III: Associations between the Assessment of Life Habits (LIFE-H) for children and Pediatric Evaluation of Disability
Inventory (PEDI) dimensions for all participants (n=94) as measured by Pearson’s correlation coefficients

PEDI Functional Skills Caregiver Assistance

Self-Care Mobility Social Function Self-Care Mobility Social Function

LIFE-H for children

Daily activities
Nutrition 0.71a 0.67 0.70 0.71 0.64 0.69
Fitness 0.68 0.69 0.63 0.70 0.73 0.56
Personal care 0.79 0.82 0.61 0.88 0.80 0.57
Communication 0.76 0.61 0.81 0.75 0.62 0.79
Housing 0.79 0.88 0.61 0.81 0.84 0.55
Mobility 0.56 0.68 0.40 0.63 0.65 0.32
Social roles
Responsibility 0.70 0.67 0.80 0.71 0.66 0.76
Interpersonal relationships 0.51 0.50 0.66 0.50 0.48 0.63
Community life (n=73)b 0.54 0.53 0.47 0.58 0.52 0.44
Education 0.69 0.69 0.60 0.74 0.65 0.56
Recreation 0.68 0.71 0.60 0.74 0.68 0.53
aPearson’s correlation coefficient; bReduced number of participants in dimension ‘Community life’ (n=73) is due to items (i.e. participation in

community groups or religious activities) that were not applicable for several children and no score was computed for children in this category.

668 Developmental Medicine & Child Neurology 2007, 49: 666–671

accomplished without difficulty and assistance (score of ‘9’)
leading to a bimodal distribution with almost no intermedi-
ate scores and, thus, a serious lack of variability. As to whether
or not a systematic bias occurred, the mean deviations (d)
between the first and second assessment scores for most
LIFE-H categories were of a small magnitude, the highest
reaching only 0.42 (0–10 scale), thus suggesting no systemat-
ic deviation or learning effect between two administrations
of the measures.
As expected, a slightly lower interrater reliability was
observed compared with the intrarater reliability. ICC values,
however, still reached 0.80 and higher for most of the LIFE-H
categories (Table II). Mean deviations (d) between the sec-
ond and third assessment scores (different raters) was close
to zero and even smaller than those of the test–retest reliabil-
ity. As before, lack of variability helps explain the lower relia-
bility of the ‘interpersonal relationships’ category.
unication and Responsibility; r=0.80–0.81) supporting con-
vergent validity between these concepts. However, associations
of all PEDI dimensions with some LIFE-H dimensions were
weaker (Interpersonal relationships and Community life),
supporting a distinctiveness between the two constructs:
activities of daily living (ADL) and social roles (divergent
validity). Moreover, the associations with the PEDI Caregiver
Assistance scale and the LIFE-H dimensions are quite similar
to those reported with the Functional Skills scale.
Results obtained with the Wee-FIM led to similar conclu-
sions as comparisons between dimensions of the two instru-
ments with similar constructs led to high correlations (LIFE-H
Housing and Personal care with WeeFIM Self-care, r=0.90–0.94;
LIFE-H and WeeFIM communication, r=0.89). In contrast,
WeeFIM cognitive dimensions (communication and social cog-
nition) showed a lower association with LIFE-H motor dimen-
sions (i.e. mobility, r=0.43–0.49 respectively).

CONSTRUCT VALIDITY PROFILES OF SOCIAL PARTICIPATION

Correlations between the LIFE-H and PEDI dimensions var-
ied (Table III) and, as expected, categories with similar con-
structs generally led to higher correlations. For example, the
PEDI Self-care and Mobility dimensions (Functional Skills
scale) were strongly associated with LIFE-H Personal care and
Housing dimensions (0.79<r<0.88) and PEDI Social function
was strongly associated with two LIFE-H categories (Comm-
As participation consists of different sub-concepts, it is possi-
ble that the degree of involvement or reduction varies between
dimensions. The profile of the 11 categories of participation
showed a large variability in many dimensions, and several
distributions ranged from 0 or 1 (lower scores) to 10 (higher
scores) suggesting different levels of participation in the
sample of children. As for daily activities, there was a greater

Figure 1: Distribution of Interpersonal relationships Communication Personal care

the Assessment Life Habits
a b 0.009 c 0.02
for Children (LIFE-H) 0.001 0.14 0.001
OP
accomplishment scores 10
LIFE-H accomplishment score

for six categories of

participation (a–f) 8
according to the
diagnosis of the children 6
(cerebral palsy [CP],
n=48; neuropathy [N], 4
n=12; myelomeningocele
[MMC], n=15). Circles in 2
graph represent outlier
values. 0
MR
p values (such as 0.009) CP N MMC CP N MMC CP N MMC
indicate level of
statistical significance Mobility Education Recreation
between two groups. OP, d 0.15 e 0.03 f 0.013
optimal participation; OP 0.06 0.004 0.004 0.017
MR, maximal restriction. 10
LIFE-H accomplishment score

MR 0
CP N MMC CP N MMC CP N MMC

Measuring Participation in Children with Disabilities using LIFE-H Luc Noreau et al. 669
participation reduction in dimensions such as Personal care
and Mobility, and for the social roles, interpersonal relation-
ships seemed to be achieved with little difficulty or assistance
for a substantial number of children compared with the
achievement of roles related to education, community life,
and leisure.
This large variation raises the question as to the influence of
the underlying diagnosis or impairments on the dimensions of
participation in children with disabilities as depicted by diag-
nosis for three specific groups of children (Fig. 1a–f). First, few
differences are observed in interpersonal relationships and
there was no statistical difference among the three groups (Fig.
1a). CP and neuropathy disrupt communication in a similar
way (Fig. 1b), some children presenting major restrictions
while others do not, which contrasts with those with MMC who
seemed to manage relatively well when it came to communica-
tion. In personal care, all children with neuropathy showed
severe restrictions (Fig. 1c). Of those with MMC, however,
about 50% did not report significant restrictions (median score
of 8) compared with the rest of the sample. Finally, three other
significant dimensions of the children’s lives (mobility, educa-
tion, and recreation) revealed similar patterns of participation
reduction according to diagnosis (Fig. 1d–f).
Discussion
The objectives of this study were to examine some psychomet-
ric properties of the LIFE-H, a measure of participation for chil-
dren, and to draw a profile of the level of participation in a
sample of children with various impairments. Given that the
ICF is relatively new, it is currently difficult to find tools that fit
perfectly with its participation dimensions but LIFE-H seems to
cover most of them and assesses an important construct of par-
ticipation (difficulty and assistance when the child carries out
life habits in their actual life context) without overlapping with
an activity measure. The ability to make this differentiation
when measuring the ICF dimensions has been reported as an
essential means to achieve general acceptance.25 Moreover, an
independent measure for each ICF dimension is crucial if stud-
ies are to be conducted to identify potential variables con-
structs that contribute towards explaining the variance in
participation levels observed among children with disabilities.
Findings of this study support the relevance of the LIFE-H,
especially in respect to its ability to cover the field of participa-
tion for children and the comprehensiveness of its items.
Interestingly, among the panel, parents tended to emphasize
the necessity of a more in-depth coverage of the role of social
issues (education, recreation) within the measure and report-
ed a more general agreement as to the LIFE-H comprehensive-
ness. This finding is particularly interesting considering that
parents are essentially the primary experts when it comes to
appraising participation of their children. Parents experience
with and proximity to their child makes them ‘actual and accu-
rate specialists’ of several dimensions of participation. With
this in mind, their comments about such a measure must be
taken into account, given that they are the ones who will usual-
ly provide responses for their child.
Overall, the LIFE-H for children demonstrated moderate
to excellent intra- and interrater reliability. Reliability coeffi-
cients that exceed 0.7 are judged as acceptable for popula-
tion-based research. However, the lack of inter-participant
variability in the performance of some categories of partici-
pation has influenced the ICCs, and the lack of variability
670 Developmental Medicine & Child Neurology 2007, 49: 666–671
clearly appeared in a sub-group of participants who showed
a similar accomplishment score (between 2 and 5) for mobil-
ity and education (neuropathy) or between 8 and 10 for com-
munication (MMC). Beyond the resulting statistical instability,
this lack of variability raises the question, particularly for the
‘interpersonal relationships’ dimension that is not explained
by an impairment-dependent phenomenon, as to whether
the measure should have more sensitive items to capture
restrictions in participation that are currently not detectable.
Another way of putting the current results into context is
to compare the reliability of other instruments used to assess
children’s participation. Morris et al,26 in a thorough review,
summarized the evidence of reliability for such instruments.
The LIFE-H reliability data, with most ICCs exceeding 0.80,
compares favourably to any of the six other instruments
reported by the authors. Although the current experimenta-
tion was carried out with interviewers, a previous study using
a self-administration form of the original version of LIFE-H
with parents who raise children with disabilities, showed slight-
ly lower reliability;10 however, significant improvements in
instructions over time are likely to enhance the psychometric
properties of the self-administered form.
Convergent and divergent validity of the LIFE-H was demon-
strated by comparison with the PEDI and WeeFIM. Higher
levels of convergent validity (expressed by higher correla-
tions) were observed with tool’s dimensions addressing sim-
ilar constructs (e.g. self-care vs personal care and housing;
social functions vs communication or responsibilities). As
the PEDI and WeeFIM are essentially measures of functional
capabilities, the low correlations between most of their dimen-
sions and some LIFE-H categories (i.e. mobility, interpersonal
relationships, community life) were expected as the LIFE-H
is a measure of participation, a broader concept than func-
tional independence. However, as the correlations are mod-
erate rather than low, it supports the hypothesis that ADL
contribute toward the achievement of social roles.
An interesting complement to this methodological study
is the profile of participation drawn from the LIFE-H. It clear-
ly showed that participation is variably affected in children
with disabilities and that huge variations can be observed
between impairment groups. This important finding sup-
ports the necessity of using measures that allow differentia-
tion between scores across dimensions and diagnostic groups.
A previous study showed that each type of CP (diplegia,
hemiplegia, quadriplegia) has its own pattern of participa-
tion, which vary across the participation dimensions.18 This
finding does not support the use of a measure that would
provide only a single score of participation as a single-score
measure risks missing significant information on several dimen-
sions of a child’s life. Finally, LIFE-H seems to be the sole mea-
sure that can capture most of the participation dimensions of
children with disabilities, as acknowledged by the ICF. Other
suitable measures exist but they tend to address one or a few
dimensions7,27 or are focused on a specific impairment (e.g.
traumatic brain injury).6
Conclusion
In conclusion, the psychometric properties of the LIFE-H are
comparable to several tools used in paediatric rehabilitation
and meet the usual methodological standards. Its content
allows a complete description of the person-perceived par-
ticipation applied to children with disabilities. Moreover, the
tool can depict variations across dimensions and across diag-
nosis, which is, to some extent, a prerequisite for designing
research or service implementation that aims at enhancing
optimal participation among these children.
Accepted for publication 29th March 2007.
Acknowledgements
The authors are indebted to the research therapists of Le Carrefour
de santé de Jonquière, L’Institut de réadaptation en déficience
physique de Québec, and Le Centre de réadaptation Marie-Enfant
for their outstanding support during the data collection and to all
parents engaged in the study. This research programme has been
funded by l’Institut de réadaptation en déficience physique de
Québec (Internal Program) and by the ‘Réseau de recherche sur le
développement, la santé et le bien-être de l’enfant (FRSQ)’.
References
1. King G, Tucker M, Baldwin P, Lowry K, LaPorta J, Martens L.
(2002) A life needs model of pediatric service delivery: services to
support community participation and quality of life for children
and youth with disabilities. Phys Occup Ther Pediatr 22: 53–77.
2. Rosenbaum P. (2003) Cerebral palsy: what parents and doctors
want to know. BMJ 326: 970–974.
3. Simeonsson R, Carlson D, Huntington G, McMillen J, Brent J.
(2001) Students with disabilities: a national survey of
participation in school activities. Disabil Rehabil 23: 49–63.
4. Law M. (2002) Enhancing participation. Phys Occup Ther Pediatr
22: 103.
5. Law M, Finkelman S, Hurley P, Rosenbaum P, King S, King G,
Hanna S. (2004) Participation of children with physical
disabilities: relationships with diagnosis, physical function, and
demographic variables. Scand J Occup Ther 11: 156–162.
6. Bedell GM, Dumas HM. (2004) Social participation of children
and youth with acquired brain injuries discharged from inpatient
rehabilitation: a follow-up study. Brain Inj 18: 65–82.
7. King G, Law M, King S, Hurley P, Hanna S, Kertoy M, Rosenbaum P.
(2007) Measuring children’s participation in recreation and
leisure activities: construct validation of the CAPE and PAC. Child
Care Health Dev 33: 28–39.
8. Detmar S, Hosli E, Chorus A, Van Beeku T, Vogels T, Mourad-
Baars P, Engelberts A, Groothuis-Oudshoorn C, Verrips G. (2005)
The development and validation of a handicap questionnaire for
children with a chronic illness. Clin Rehabil 19: 73–80.
9. World Health Organization. (2001) International Classification
of Functioning, Disability and Health. Geneva: World Health
Organization.
10. Fougeyrollas P, Noreau L, Bergeron H, Cloutier R, Dion SA,
St-Michel G. (1998) Social consequences of long-term
impairments and disabilities: conceptual approach and
assessment of handicap. Int J Rehabil Res 21: 127–41.
11. Fougeyrollas P, Beauregard L. (2001) Disability: an interactive
person-environment social creation. In: Albretch GL, Seelman KD,
Bury M, editors. Handbook of Disability Studies. Thousand
Oaks, CA: Sage publications. p 171–194.
12. Fougeyrollas P, St-Michel G, Blouin M. (1989) La révision du
concept de handicap et sa nomenclature. Réseau International
CIDIH 2: 21–22. (In French).
Measuring Participation in Children with Disabilities using LIFE-H Luc Noreau et al.
13. Noreau L, Fougeyrollas P, Vincent C. (2002) Assessment of
the quality of social participation. Technology and Disability
14: 113–118.
14. Noreau L, Desrosiers J, Robichaud L, Fougeyrollas P, Rochette A,
Viscogliosi C. (2004) Measuring social participation: reliability
of the LIFE-H in older adults with disabilities. Disabil Rehabil
26: 346–352.
15. Noreau L, Fougeyrollas P. (2000) Long-term consequences of
spinal cord injury on social participation: the occurrence of
handicap situations. Disabil Rehabil 22: 170–180.
16. Rochette A, Desrosiers J, Noreau L. (2001) Association between
personal and environmental factors and the occurrence of
handicap situations following a stroke. Disabil Rehabil
23: 559–569.
17. Desrosiers J, Noreau L, Rochette A, Bravo G, Boutin C. (2002)
Predictors of handicap situations following post-stroke
rehabilitation. Disabil Rehabil 24: 774–785.
18. Lepage C, Noreau L, Bernard PM, Fougeyrollas P. (1998) Profile
of handicap situations in children with cerebral palsy. Scand J
Rehabil Med 30: 263–272.
19. Lepage C, Noreau L, Bernard PM. (1998) Association between
characteristics of locomotion and accomplishment of life habits
in children with cerebral palsy. Phys Ther 78: 458–469.
20. Haley S, Coster W, Faas R. (1991) A content validity study of the
Pediatric Evaluation of Disability Inventory. Ped Phys Ther
3: 177–184.
21. Ottenbacher KJ, Taylor ET, Msall ME, Braun S, Lane SJ,
Granger CV, Lyons N, Duffy LC. (1996) The stability and
equivalence reliabilty of the Functional Independence Measure
for Children (WeeFIM). Dev Med Child Neurol 38: 907–916.
22. Bland J, Altman D. (1986) Statistical methods for assessing
agreement between two methods of clinical measurement.
Lancet 8476: 307–310.
23. Rankin G, Stokes M. (1998) Reliability of assessment tools in
rehabilitation: an illustration of appropriate statistical analyses.
Clin Rehabil 12: 187–199.
24. Machin D, Campbell M, Fayes P, Pinol A. (1997) Sample Size Tables
for Clinical Studies. 2nd edn. Oxford: Blackwell Science Ltd.
25. Jette A, Haley S, Kooyoomjian J. (2003) Are The ICF activity and
participation dimensions distinct? J Rehabil Med 35: 145–149.
26. Morris C, Kurinczuk J, Fitzpatrick R. (2005) Child and family
assessed measures of activity performance and participation for
children with cerebral palsy: a structured interview. Child Care
Health Dev 31: 397–407.
27. Coster W, Deeney T, Haltiwanger J, Halley S. (1998) School
Function Assessment. San Antonio, TX: Psychological
Corporation/Therapy Skill Builders.
List of abbreviations
ADL Activities of daily living
ICF International Classification of Functioning,
Disability and Health
LIFE-H Assessment of Life Habits
MMC Myelomeningocele
PEDI Pediatric Evaluation of Disabilities Inventory
WeeFIM Functional Independence Measure for Children
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