Professional Documents
Culture Documents
I
I
Maria Mullally
Carolyn Politi
Key words
I
Participation
Children
Enfants
Disability
Photographs
Case study
Mots cls
I
Participation
Handicap
Photos
tude de cas
Abstract
Background. Children with disabilities are particularly vulnerable to participation restrictions resulting from the interactions
between children and their physical and social environments. Purpose. The purpose of this study was to gain a better
understanding of how children with disabilities view their participation in out-of-school-time (OST) activities in a range of
environmental settings. Methods. A case-study design was used to examine six childrens views on their OST activities using the
Childrens Assessment of Participation and Enjoyment (CAPE), photographs of their OST activity settings, and semi-structured
interviews. Findings. CAPE results indicated that the children participated most often in recreational activities. Through the use
of photographs and interviews, four major themes emerged that emphasized a deep interconnection between childhood
activities and settings. Implications. This unique pilot study contributes to developing an understanding for occupational
therapists about how children with disabilities view their participation, their activity environments, and how photographs can
be used to engage children in research.
Rsum
Description. Les interactions entre les enfants et leur environnement physique et social permettent dobserver que ceux et celles
qui sont atteints dun handicap sont particulirement vulnrables aux restrictions de participation. But. Cette tude avait pour
objectif de mieux comprendre la perception des enfants handicaps lgard de leur participation des activits se droulant
divers endroits en dehors des heures de classe. Mthodologie. Une tude de cas a t utilise afin dexaminer la perception de six
enfants diffrents au moyen de la Childrens Assessment of Participation and Enjoyment (CAPE), de photos prises lors des activits
en dehors des heures de classes et dentrevues semi-structures. Rsultats. Les rsultats de la mesure CAPE indiquent que les
enfants participaient le plus souvent des activits de loisirs. Les photos et les entrevues ont permis de faire ressortir quatre
thmes principaux mettant en valeur le lien profond qui existe entre les activits des enfants et les diffrents endroits o elles ont
lieu. Consquences. En plus daider les ergothrapeutes mieux comprendre comment les enfants handicaps conoivent leur
participation et peroivent les endroits o se droulent leurs activits, cette tude pilote dmontre comment la photographie
peut permettre de faire participer des enfants la recherche.
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preferences, and family participation in social and
recreational activities as major determinants of the childs
participation. In addition, they found that child and family
preferences were important predictors of childrens participation following adjustment for the childs functional ability.
They also found that factors such as family cohesion and
parental perceptions of environments were relatively
unsupportive, and supportive relationships for the child
indirectly influenced child participation (King et al.).
Research on childrens issues has typically been
conducted by gathering information about the child from
sources such as parents and health care professionals without
seeking the unique perspective of the child (Driessnack,
2005; Kortesluoma, Hentinen, & Nikkonen, 2003).
Researchers have acknowledged the importance of capturing
childrens unique perspectives, which differ from adult
concerns and perceptions (Coles, 1986). Despite this
recognition, interviewing children poses unique challenges
and many of the traditional adult interviewing techniques are
not effective for eliciting childrens perspectives (Bradding &
Horstman, 1999, as cited in Driessnack). Nonetheless,
understanding children with disabilities unique perspectives
is essential to the future development of programs, services,
and opportunities to effectively meet their activity needs.
Two theoretical frameworks were used to guide the
exploration of children with disabilities perspectives of their
OST activities and their environments: The International
Classification of Function and Disability ([ICF]; WHO, 2001)
and the Canadian Model of Occupational Performance
([CMOP]; Canadian Association of Occupational Therapists
[CAOT], 1997). The ICF recognizes that disability is a
universal human experience and shifts the focus from the
cause of a specific disability to the impact it has on the lives
of people in society. The ICF takes into account the social
model of disability, which regards disability as a social issue
and not an individuals attribute (Forsyth, Colver, Alvanides,
Woolley, & Lowe, 2007). The CMOP is an occupational
therapy model that depicts the dynamic interaction that
exists between persons, environment, and occupation
(CAOT). Spirituality lies at the centre of the model,
representing the idea that spirituality resides in persons, is
shaped by the environment, and gives meaning to
occupations (CAOT, p. 33).
In the present study, photographs were used as a
medium to give a voice to children with disabilitiesa
population whose perspective has often been overlooked in
past research. The photographs were used as a tool during the
interview process to elicit information and descriptions of
supports and barriers to childrens OST activity
environments. Please note that typically developing children
were not used as a comparison in this study. The purpose of
this study was to gain a better understanding of how children
with disabilities view their participation in OST activities and
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Methods
A case study design was used to gain a better understanding
of the OST activities and activity settings of children and
youth with disabilities. Case studies are useful when
exploring new or complex phenomena in order to obtain a
more holistic view of the phenomenon of interest (Fitzgerald,
1999; Tellis, 1997). In this study, cases consisted of a child or
youth with a disability and a parent, as appropriate. This pilot
study is a collective case study; that is, it examines multiple
cases in order to develop a greater understanding of a
phenomenon and explore new or under-researched areas
(Fitzgerald; Stake, 1995).
Participants
Ethical approval for the study was obtained from McMaster
University and a childrens rehabilitation centre in southern
Ontario. This centre previously completed research with
CanChild Centre for Childhood Disability Research and had
expressed an interest to be involved in any CanChild research
that focused on childrens participation. CanChild works in
partnership with all Ontario childrens rehabilitation centres.
Prior to participation in the study, written consent was
obtained from the parents or the guardians of participants
and assent was obtained from the child participants.
Participants were able to withdraw from the study at any time
without consequence.
Recruitment packages were sent to the childrens rehabilitation centre and then mailed by the administrator to eligible
families. Included in the study were children and youth of
either sex, between the ages of 8 and 13, living with a
disability, and attending the centre where recruitment was
done. Children were excluded if they were unable to
communicate their activities and experiences (as judged by
their parents at time of recruitment), or if participants or
their parent(s)/guardian(s) felt uncomfortable or unable to
respond to interview questions and questionnaires in
English. Children under the age of eight years were excluded
from the study as children of this age have been found to be
less able to reliably recall and articulate their activity participation and activity settings (Zwiers & Morrissette, 1999).
Study participants consisted of six English-speaking
Caucasian children ages 8 to 13 with various physical and
developmental disabilities. Four participants had physical or
motor impairments and two participants had developmental
disabilities. The sample consisted of five males, including one
set of brothers, and one female. Five participants were from a
two-parent family, and one participant was from a singleparent family. Five participants lived in a major urban
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TABLE 1
Participant information.
Participant
Sex Age
Type of disability
Mobility
13
11
13
10
13
Emotional/Behavioural/ Independent
Developmental
Emotional/Behavioural/ Independent
Developmental
Cardiopulmonary
Independent/
Wheelchair
Physical/Motor
Independent
impairment
Wheelchair
Physical/Motor
Independent/
impairment
Wheelchair
Physical/Motor
impairment
Wheelchair
Data collection
Measures
Participants views of their OST activities, their environments,
and their associated meanings were captured using multiple
methods, including a standardized assessment, the Childrens
Assessment of Participation and Enjoyment (CAPE; King et
al., 2004), photographs, and semi-structured interviews.
Quantitative data and photographs were used selectively to
enhance the qualitative interview data. The use and
integration of multiple sources of data help to support case
findings and reduce the likelihood of misinterpretation (Yin,
2003). Specifically in relation to research with children, it has
been noted that the use of multiple methods may produce
richer data and a better representation of childrens
experiences, especially if the methods help to engage the
childrens attention and interest (Darbyshire, MacDougall, &
Schiller, 2005).
The CAPE is a standardized assessment of childrens
activity participation outside of school-mandated activities. It
measures five dimensions of activity participation: the
number of activities a child/youth does, how often, with
whom, where, and their level of enjoyment. The CAPE
includes 50 activities within 5 activity types: recreational,
active physical, social, skill-based, and self-improvement
activities. The psychometric properties of the CAPE have
been reported (King et al., 2004; Law, Baum, & Dunn, 2005).
Test-retest reliability for the five scales on the CAPE range
from poor to good (0.64 to 0.86) based on intra-class
correlation coefficients. Internal consistency ranges from
poor to adequate (0.32 to 0.62) based on Cronbachs alpha.
Content validity was addressed in the tool development, and
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CMOP, which places importance on the meaning behind the
activity (CAOT, 1997). The open-ended interview questions
provided the child participants the opportunity to identify
and explore the meaning of their activity environments.
Questions asked were also consistent with the ICF, which
recognizes that disability is a universal human experience
and shifts the focus from the cause of a specific disability to
the impact it has on the lives of people in society (Forsyth et
al., 2007).
All interviews were conducted by pairs of entry-level
masters occupational therapy students. Each pair of students
interviewed at least one participant, and there were six
student researchers in total. The same pair of researchers
carried out both interviews (phase two of the CAPE and the
semi-structured interview) with a given participant in order
to establish and maintain rapport. Researchers did not have
knowledge of participants or the recruitment agency prior to
the study. Before conducting interviews, each member of the
study team used self-reflection to identify potential personal
preconceptions relevant to the study and also identified and
bracketed their assumptions about expected results.
Procedure
Families who expressed interest in participating in the study
were contacted by a member of the study team to arrange an
initial home visit. Prior to the visit, families received a
package in the mail containing a letter of information,
consent form, self-report demographic questionnaire, and
phase one of the CAPE to complete on their own.
In the initial meeting at the participants home, the
researchers facilitated completion of phase two of the CAPE
by the participant with the assistance of a parent, as
appropriate. Participants were then given a disposable camera
and instructed to take photographs of their usual OST activity
settings over a minimum of seven days. The families received
postage-paid envelopes in which to return the cameras to the
study team. Photographs were then developed and returned to
participants during the second meeting. At that time, the
content of the photographs was discussed with the participants in semi-structured, home-based interviews. Interviews
lasted an average of 30 minutes and no longer than one hour.
Interviews were tape-recorded, transcribed, and reviewed by
the interviewers to check for accuracy. The total time
commitment for each participant, including both home visits,
was no more than two hours. Data for this pilot study was
collected over the five-week time period available for the
student research project. Transcription of the interviews was
completed by an outside source and checked by the pairs who
had completed the interviews.
Data analysis
Descriptive statistics (means, medians, and standard
deviations) for CAPE data were calculated and served to
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describe five dimensions of the participants activity participation. Using the CAPE data, participation intensity was also
calculated by dividing the sum of item frequency by the
number of possible activities in each activity-type scale. The
photographs that study participants took were used to
illustrate and enrich interview findings. The content of the
photos was not analyzed per se, but all researchers viewed the
photos during the coding process to be aware of OST activity
environments that participants had photographed.
The six researchers analyzed the Interview transcripts
using an inductive content-analysis approach (Graneheim &
Lundman, 2004). This process involved coding statements
based on their key concepts, clustering these codes into
themes, and then refining the themes. An editing approach to
analysis was also used in that codes emerged from the data
and were not predetermined (Miller & Crabtree, 1999).
Coding was done manually, and negative case analysis was
used to ensure that all data were represented in the final
themes. The entire student research team established a
coding scheme based on the first two transcripts, and one
pair of student researchers coded the remaining four
transcripts once an understanding of the phenomenon had
been established. Maintaining at least two researchers in this
role guaranteed triangulation. To ensure that all researchers
had an understanding of each participants perception of OST
activities, each team member read all six interview
transcripts. Themes were subsequently developed by all
researchers from an inductive analysis of the codes. This
involves grouping related codes and identifying them under a
theme so that each code is captured in one of five themes.
Theoretical saturation cannot be presumed as sampling was
not continued to the point of redundancy in the data because
the time available for data collection was limited.
The quantitative and qualitative data were used to
develop a description of the nature and context of OST
activities for the study participants. A decision trail was
documented by the researchers as a group throughout the
analysis process.
Trustworthiness
Several strategies were implemented during the research
process to ensure the trustworthiness of the results (Letts et
al., 2007). Credibility was ensured by using multiple methods
of gathering data, using a reflective approach on the part of
the research team to increase awareness of personal bias,
triangulation in the use of quantitative and qualitative data,
and having multiple researchers. The time constraints of the
study precluded the use of member-checking to verify data
and interpretation. Dependability was reinforced by the
description of an audit trail. Confirmability was also
supported by having a team of researchers along with expert
input from experienced research supervisors.
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Results
Results from the CAPE were used to gain a general
description of the participants participation over the fourmonth period from December to April prior to the
interviews. The CAPE was used to determine the intensity of
activity (what form of activities children participated in the
most) and the enjoyment of activities. CAPE results group
activities based on type as well as their formal or informal
nature. The five activity types include recreation activities
(e.g., puzzles and watching television), physical activities
(e.g., swimming and track and field), social activities (e.g.,
playing with friends and talking on the phone), skill-based
activities (e.g., music lessons or horseback riding), and selfimprovement activities (e.g., reading and going to the
library). Formal activities have designated leaders and rules
or goals, whereas informal activities involve no planning
prior to the activity.
The results of the mean intensity scores from the CAPE
indicate that subjects participated the most in recreational
activities (mean = 4.07, standard deviation [SD] = 1.02)
followed by social (mean = 3.20, SD = 0.87), selfimprovement (mean = 2.77, SD = 1.40), active physical
(mean = 1.53, SD = 1.35), and skill-based activities (mean =
FIGURE 1
Intensity of participation divided by activity type, from the Childrens Assessment of Participation and Enjoyment.
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FIGURE 2
Intensity of participation divided by formality of activities from the Childrens Assessment of Participation and Enjoyment.
FIGURE 3
Enjoyment of participation divided by activity type, from the Childrens Assement of Participation and Enjoyment.
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FIGURE 4
Intensity of participation divided by formality of activities from the Childrens Assessment of Participation and Enjoyment.
Experience of place
Participants articulated both positive and negative experiences
of place in relation to their level of enjoyment, likes and
dislikes, and feelings about being in that place. Experience of
place was intertwined with, and thus difficult to differentiate
from, the activity done there. Participants enjoyed a variety of
activities that they often found meaningful.
Positive experiences were often described as fun and
matched their interests and abilities while negative
TABLE 2
Participants photographs of activity environments.
Participant
1
2
3
4
5
6
Favourite places
Butterfly
conservatory
Park
Road/Street
Bedroom
Bedroom
Barnyard
Respite home
Church
Grocery store
The path
Church
Park
Living room
Library
Park
Garden
Library
Movie theatre
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FIGURE 5
FIGURE 6
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FIGURE 7
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Discussion
The six children in this study participated in and enjoyed a
wide variety of activities in various settings, as captured by
the CAPE data and the qualitative interviews and as
illustrated in their diverse photos. There was no significant
evidence of participation restriction, though it has been
noted that children with disabilities may be vulnerable to this
(Forsyth & Jarvis, 2002; Law et al., 1999; Law, King, et al.,
2006). These findings could be a testament to participants
and their families making participation in activities a priority,
although results may indicate a bias in that parents who are
actively involved with their childrens participation may have
been eager to be a part of the study.
The CAPE data show that participants had the highest
mean intensity of participation in recreational activities, and
higher intensity of informal activities overall when compared
to formal activities. Participants also enjoyed physical
activities best as shown by the mean enjoyment data and had
similar enjoyment of formal and informal activities. It was
noted that participants did not necessarily have the highest
intensity participation in the activities in which they also had
the highest enjoyment. A previous study using the CAPE
with a large sample also showed higher participation in
informal versus formal activities (Law, King, et al., 2006).
This study also noted different patterns of participation
between genders. The sample of the current study had only
one girl and five boys, and therefore no trends can be seen.
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Though the participants photographs were not analyzed
in a systematic way, they proved to be an effective method in
this study for several reasons. For example, they allowed
researchers to access participants unique views in that a
given place might be named by one participant as favourite
and by another as least favourite. This was seen with the
park and church activity environments. Having the participants then elaborate on their photos allowed the researchers
to understand their experiences in greater depth. Using
photographs in a qualitative interview also allowed
researchers to engage children in research, and it was a
communication tool to elicit their experiences and ideas.
Both participants and their parents were receptive to taking
photographs. For some participants, the use of cameras was
an important factor in their decision to participate in the
study. Furthermore, some children actually took up
photography as a new hobby after using the cameras. In this
way, the current pilot study expands on previous studies in
which children took photographs but did not have the
opportunity to discuss them (Darbyshire et al., 2005).
Overall, in discussing OST activities and activity
settings, participants experiences highlighted that the setting
and the activity were closely interconnected. For example,
when asked about their likes and dislikes, participants often
cited that they liked a setting because of the activity they did
there. In essence. this finding illustrates one of the theoretical
frameworks used to guide the study, the CMOP (CAOT,
1997), as it speaks to the dynamic interaction between the
participants, the activities, and activity settings. Participants
many activities clearly brought meaning to their lives. This
finding is similar to that found in the literature that describes
participation as an experience of engaging in meaningful
occupations and maintains that participation is important to
health (CAOT; Law, Petrenchik, Ziviani, & King, 2006). In
general, participants focussed on the positive and were more
easily able to articulate what they liked about both favourite
and least favourite places as opposed to what they disliked.
This may have been because they were asked to take pictures
of places they go to, and they may rarely frequent places that
they dislike, for personal reasons or simply because their
families do not go there. Also, the findings are weighted
towards favourite places since two of these photographs were
discussed, compared with only one least favourite place.
Participants ability to connect to an environment was an
important aspect of their experience. It is significant that all
participants described positive experiences with nature or
animals, including pets. These connections provided
opportunities for discovery and learning. Furthermore, the
social support necessary for participation stood out, an
observation that, in fact, previous authors (Heah, Case,
McGuire, & Law, 2007; King et al., 2006) have noted. Children
viewed people in the environment as helpful and rarely
described the social environment as a barrier to participation.
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This study has relevance to clinical practice with
children with disabilities and to policies that influence the
built environment. For example, the results may encourage
health care practitioners such as occupational therapists to
focus on what a child can do and a childs participation rather
than on participation restriction. Also, this study shows that
children with disabilities, along with their social supports, are
able to negotiate the environment to participate and have fun.
Occupational therapists may be in roles in which they can
partner with children and families to facilitate this process. It
was also noted that participants volunteered ideas to change
and improve the activity environments around them. This is
certainly a reminder of the importance of involving people
with disabilities when developing policies that will influence
them as they are the end-users and have an expertise based
on their life experiences.
This pilot study demonstrates that many opportunities
remain for developing further research that explores the
relationship between childrens participation in OST activities
and the activity settings. Future studies could use larger
samples to allow for a better comparison with previous CAPE
studies with large samples or to make it possible to have two
groups within a study to allow for comparison. For example, a
group of children with disabilities could be compared with a
group of typically developing children to look at similarities
and differences in participation in OST activities and views on
activity settings. This study included children with varied
disabilities; therefore, future research could focus on a larger,
more homogenous sample in order draw stronger conclusions
related to the perspective of one group. Other areas for further
investigation include advocacy by children with disabilities
and the roles that families and communities play in facilitating
or limiting a childs participation.
Conclusion
This study demonstrates the wide variety of activities and the
respective settings experienced by six children with various
disabilities. Participants often enjoyed activities when they
felt connected to the environment and if the activity setting
provided physical or social supports to enable their participation. Despite experiencing environmental barriers, the
children did not focus on how their disabilities limited their
participation, but rather they adapted to and overcame these
obstacles. Ultimately, they were able to fulfill a major goal of
activity participation for all children: having fun. By
interviewing the young participants, this study provided a
platform that gave these children an opportunity to share
their ideas and to speak about their activities and
environments using their own voices. The results of this
study should encourage other researchers to employ the
voices of children in future research endeavours. The
application of this client-centred research is important not
only in the exchange of critical information between
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Key messages
This pilot study explored OST activity participation
from childrens perspectives. Using photographs in a
qualitative interview was an effective method to engage
children in research and elicit their experiences.
Participants experiences highlighted that the setting
and the activity were closely interconnected.
Participants described actions they had taken to elicit
change in order to enhance their participation. This
research project provided them a platform from which
they could share their ideas for change. The voices of
children can be valuable to future research, especially
to maintain a client-centred focus.
Acknowledgements
The authors would like to thank the child development centre
and their staff as well as the CanChild Centre for Childhood
Disability Research, Hamilton, Ontario, for their support
with this research. Special thanks to the children and families
who participated in this project and shared their unique
voices with us.
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Authors
Johanna Harding, MSc OT, OT Reg. (Ont.) is Occupational
Therapist, CBI Physiotherapy and Rehabilitation Centre, 305
Milner Ave., Suite 214, Scarborough, ON, Canada, M1B 3V4.
Telephone: 1-416-289-3930. E-mail: jharding@cbi.ca.
Kimberly Harding, MSc OT, OT Reg. (NS.), is Occupational
Therapist, St. Marthas Regional Hospital, 25 Bay St.,
Antigonish, NS, Canada, B2G 2G5.
Patricia Jamieson, MSc OT, OT Reg. (Ont.), is Occupational
Therapist, Hpital Rgional de Sudbury Regional Hospital, 41
Ramsey Lake Road, Sudbury, ON, Canada, P3E 5J1.
Maria Mullally, MSc OT, OT Reg. (Ont.), is Occupational
Therapist, The Ottawa Hospital, Civic Campus, 1053 Carling
Ave., Ottawa, ON, K2P 0X7.
Carolyn Politi, MSc OT, OT Reg. (Ont.), is Occupational
Therapist, Functional Rehabilitation, Inc., 115 King St. W., Suite
200, Dundas, ON, Canada, L9H 1V1.
Erline Wong-Sing, MSc OT, is Occupational Therapist, Providence
Health Care, 1081 Burrard Street, Vancouver, BC, Canada, V6Z
1Y6.
Mary Law, PhD, FACOT, FCAHS, Professor and Associate Dean,
School of Rehabilitation Science, McMaster University, 1400
Main St W, Hamilton, ON, Canada, L8S 1C7
Theresa M. Petrenchik, PhD, OT Reg. (Ont.), CanChild Centre for
Childhood Disability Research, McMaster University, 1400
Main St W, Hamilton, ON, Canada, L8S 1C7.
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