Physical & Occupational Therapy in Pediatrics, 32(2):167–179, 2012

C 2012 by Informa Healthcare USA, Inc.
Available online at http://informahealthcare.com/potp
DOI: 10.3109/01942638.2011.631100

Social Participation of Adolescents with Cerebral

Palsy: Trade-offs and Choices
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

Debra A. Stewart1 , John J. Lawless2 , Lorie J. Shimmell1 , Robert J. Palisano3 ,

Matthew Freeman1 , Peter L. Rosenbaum4 , & Dianne J. Russell5
1
School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada,
2
Empire State College/SUNY, Utica, New York, USA, 3 Drexel University, Philadelphia,
PA, USA, 4 Department of Paediatrics, McMaster University, Hamilton, Ontario,
Canada, 5 CanChild Centre for Childhood Disability Research, McMaster University,
Hamilton, Ontario, Canada

ABSTRACT. This article reports on the findings of a qualitative study about the ex-
periences and perceptions of adolescents with cerebral palsy (CP) in relation to social
For personal use only.

participation. A phenomenological approach was used to interview 10 adolescents with

CP, 17 to 20 years of age, selected using purposeful sampling. An iterative process of data
collection and analysis resulted in four themes about social participation. The themes
of experience, barriers, and supports, and tradeoffs supported the current view of partic-
ipation as a dynamic interaction between person and environment. The fourth theme
of making choices described the unique challenges facing adolescents with CP in terms
of deciding what was most important and meaningful to them now and in their future.
Health care professionals can support adolescents as they develop the capacity to make
their own decisions during the transition to adult living by ensuring that assessments
and interventions address social participation.

KEYWORDS. Adolescence, cerebral palsy, person-environment relations, social par-

ticipation, transition to adulthood, youth

Adolescence is a time of significant growth, maturation, and identity development

(Kail, Cavanaugh, & Ateah, 2006). It is described as a transitional developmen-
tal period between childhood and adulthood in which a young person experiences
changes in physical, cognitive, psychosocial, and emotional functioning (Dacey
& Margolis, 2006). Many influences on adolescent development have been de-
scribed in the literature. These include personal factors such as gender, age, and
self-efficacy; and environmental factors at different levels of family, friends, school,
community, and society (Carter, McGee, Taylor, & Williams, 2007; Delp, Brown,
& Domenzain, 2005; Dwyer et al., 2006). Recent literature has focused on the

Address correspondence to: Debra A. Stewart, School of Rehabilitation Science, Institute of Applied Health
Sciences, Room 409, McMaster University, 1400 Main Street West, Hamilton, Ontario, Canada, L8S 1C7.
(e-mail: stewartd@mcmaster.ca).
(Received 06 January 2011; accepted 19 September 2011)

167
 168 Stewart et al.

importance of participation in social activities for healthy adolescent development

(Oliver, Collin, Burns, & Nicholas, 2006). Social participation is associated with
positive health-promoting and social behaviors and outcomes for youth (Carter
et al., 2007; Darling, 2005; Fredericks & Eccles, 2006).
Chronic conditions and disabilities can affect the development of adolescents
in a number of areas (Giarelli, Bernhardt, Mack, & Pyeritz, 2008; Yeo & Sawyer,
2005). Recent studies have identified poorer mental and physical health and more
health-risk behaviors in adolescents with physical disabilities and chronic condi-
tions (Everett-Jones & Lollar, 2008; Sawin, Bellin, Roux, Buran, & Brei, 2009;
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

Young, Rochon, McCormick, Law, & Wedge, 2010). Some researchers have iden-
tified additional challenges facing youth with disabilities including poor overall
health (Verbrugge & Yang, 2002) and chronic pain (Castle, Imms, & Howie, 2007).
Participation in social activities for adolescents with chronic conditions has
gained more attention in recent years (Shikako-Thomas, Majnemer, Law, & Lach,
2008; Wagner, Cadwallader, Garza, & Cameto, 2004). Donkervoort, Roebroeck,
Wiegerink, van der Heijden-Maessen, and Stam (2007) found that 20%–30% of
adolescents and young adults aged 16–20 years identified restrictions in daily ac-
tivities. The most significant determinants of functioning were level of gross mo-
tor function, level of education, and age. In a study of youth aged 6–15 years with
physical disabilities (Law, Petrenchik, King, & Hurley, 2007) the perceived impact
of environmental barriers on participation was found to increase significantly by
For personal use only.

age, with adolescents aged 12 years and older and their parents identifying barriers
in the areas of service and assistance, attitudes, school, work, and policy. King et al.
(2009) built on these findings to identify gender and age as significant predictors
of change in activity participation in recreational and active physical pursuits over
time as a young person moved through adolescence. Carlson and Mykelbust (2002)
found that social activities varied with personal and environmental characteristics,
and that use of a wheelchair did not by itself influence social integration. The phe-
nomenon of social participation was acknowledged to be complex and to require
further in-depth study.
The current study focused on the experiences and perceptions of youth with cere-
bral palsy (CP). CP refers to a group of nonprogressive but often changing motor
impairment syndromes that result from lesions or anomalies of the brain early in de-
velopment (Rosenbaum, Paneth, Leviston, Goldstein, & Bax, 2007). The incidence
of CP is 2–2.5 per live births, approximately (Stanley, Blair, & Alberman, 2000).
The vast majority of children with CP, even those with the most severe impairments,
survive into adulthood (Hutton, Cooke, & Pharoah, 1994; Imms & Dodd, 2010). Al-
though research about adolescence and the transition to adulthood for youth with
CP has increased in the last decade, there is much that is still not understood in
relation to social participation (Stewart, 2009).
The purpose of this study was to describe the experiences and perceptions about
social participation of adolescents with CP from the qualitative portion of a large,
longitudinal study of adolescents with CP (Adolescent Study of Quality of Life,
Mobility and Exercise, “ASQME” (‘Ask me’) (Hanna et al., 2009; Livingston &
Rosenbaum, 2008; Rosenbaum, Livingston, Palisano, Galuppi, & Russell, 2007).
Previously, we reported themes pertaining to mobility experiences (Palisano et al.,
 Social Participation of Adolescents 169

2009), and participants viewed mobility as important for self-sufficiency. They ex-
pressed having to constantly plan ahead to go places and do things. Safe and effi-
cient mobility to enable participation in daily social activities was a primary con-
cern. The results directed the research team to identify ‘social participation’ as an
important phenomenon of interest, given that all participants focused on social ex-
periences and related social issues. Social participation is defined here as “involve-
ment in social life situations”, a concept that is adapted from the definition of par-
ticipation (“involvement in life situations”) in the International Classification of
Function, Disability and Health (ICF) (World Health Organization, 2001, p.10).
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

METHODS

Design
This study was designed as qualitative descriptive phenomenology in which the par-
ticipants and researchers engaged in semi-structured in-depth interviews (Creswell,
1998). A phenomenological paradigm fit with the purpose of exploring experiences
and perceptions to learn about the essence of the phenomenon of social participa-
tion.

Participants
For personal use only.

Ten youth with CP, aged 17–20 years, who resided in Ontario, Canada, partici-
pated in the study. The selection was made from the sample of 228 youth from
the ASQME study using purposeful sampling with maximum variation strategies.
We selected participants to provide a range of ages, gender, and GMFCS levels (see
Table 1). Older adolescents, 17–20 years of age, were selected based on our perspec-
tive that these youth would be able to reflect on much of the period of adolescence
and engage actively in an in-depth individual interview more easily than younger
teenagers. Of the 12 youth who were invited to participate, one did not respond
and one declined because the timing was not convenient. The person who declined
had been invited in an effort to include a participant who communicated using an
alternate communication system. All ten participants could communicate verbally.
The study was approved by the McMaster University ethics board. All youth pro-
vided informed consent. Table 2 presents relevant demographic information about
the participants.

Data Collection
A total of 14 interviews with five male and five female participants were audiotaped
and transcribed verbatim. The interviewer also made notes following each inter-
view to highlight avenues for further exploration during subsequent interviews. Af-
ter 10 interviews, the breadth of the participants’ experiences in relation to quality
of life, mobility and exercise had been heard. Second interviews were then con-
ducted with four participants to explore in greater depth the phenomenon of social
participation, and the emerging themes of trade-offs and choices. The four partici-
pants were chosen for the second interview based on their abilities to be reflective
 170 Stewart et al.

TABLE 1. Gross Motor Function Classification System: Summary

Level Summary of Gross Motor Function

I Walks without limitations at home, school, outdoors, and in the community

II Walks in most settings. Environmental factors (such as uneven terrain, inclines, long
distances, time demands, weather, and peer acceptability) and personal preference
influence mobility choices.
III Walks using a hand-held mobility device (cane, crutches, walker). Outdoors and in the
community, youth are transported in a wheelchair or use powered mobility.
IV Youth use wheeled mobility in most settings. Youth require adaptive seating and physical
assistance for transfers. Self-mobility can be achieved using powered mobility.
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

V Self-mobility is severely limited even with the use of assistive technology. Physical assistance
from one or two persons or a mechanical lift is required for transfers. Youth may achieve
self-mobility using powered mobility with extensive adaptations for seating and control
access.
a
Expanded and revised Gross Motor Function Classification System. CanChild Centre for Childhood Disability Re-
search. Retrieved January 8, 2007, from http://www.canchild.ca/.

TABLE 2. Participant Demographic Information

Participant Gender Age GMFCS Level

1 Male 19 I
2 Male 19 II
3 Female 19 III
4a Male 19 III
For personal use only.

5a Male 20 IV
6a Female 19 II
7 Female 17 I
8a Male 17 V
9 Female 18 V
10 Female 17 III
a
two interviews.

and to provide a high level of clarity and detail in their answers. Sample questions
for interviews are presented in Figure 1.

Data Analysis
Audiotaped interviews were converted to textual data, corrected, and anonymized
through verbatim transcription and stored in hard copy and electronic versions us-
ing NVivo qualitative data software (QRS International Pty. Ltd, 2000). In congru-
ence with phenomenology, the researchers decided that the codes should emanate

First interviews with 10 participants:

1. What is a typical day like for you? What are the typical activities you participate
in?
2. What has supported and/or hindered you in participating in activities that are
important to you?
Second interviews with 4 participants:
1. How do you choose/decide what to do in your social activities?
2. How has your social participation changed during your teen years?

FIGURE 1. Sample questions for interviews.

 Social Participation of Adolescents 171

from the participants; and in addition, these codes should be verified by the par-
ticipants. This participant-driven methodology resulted in an iterative process that
allowed the participants’ voices to shape the development of codes (Constas, 1992).
This also shaped the interview process so that some participants were interviewed
more than once.
When the first set of codes was identified from this analysis process, a prelimi-
nary summary for each code was provided to the research team and to each partic-
ipant for member checking. Five of the 10 participants provided feedback on the
summary’s representativeness of their experiences and perspectives. The research
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

team combined the participants’ feedback with their own perceptions to finalize
the coding scheme.
Member checking served to establish trustworthiness (i.e., credibility and de-
pendability) of the findings. Trustworthiness was also set through triangulation of
researchers: three authors (LS, DS, JL) were involved in data analysis. In addition,
two young adults with CP served as consultants on the research team. Each con-
sultant independently reviewed and commented on the coded transcripts, and par-
ticipated in discussions with the research team. Both consultants indicated that,
overall, the data analyses were representative of their personal experiences as ado-
lescents with CP.
For personal use only.

RESULTS
Results are reported under the four themes that emerged about social participation.
Supporting quotes from the 10 participants (in italics) are provided to represent all
participants’ perspectives and exemplify each theme.
Theme 1. The Experience of Social Participation
The phenomenon of social participation was first explored in relation to “expe-
rience” that was described by participants in terms of the variety of the daily activi-
ties in which they participated and changes over time. The activities included going
to school, volunteering, part-time work, sports, and group activities. It became ap-
parent that the essence of their experience was social in nature. For example, one
participant described an experience in high school:
“I kind of decided that I’m going to join something. I couldn’t join the sports
teams or anything like that, and so I took vocal music in grade nine. That went
okay . . . So after I finished the semester I asked him [teacher] if I could join the
choir. He said “Sure”. I ended up staying there until I was in grade 12.”
All participants spoke of the importance of doing things with friends. Experi-
ences with friends ranged from going to movies or restaurants to just “hanging out”
at malls or each others’ homes.

“I’m not much of a party animal. I will maybe hang out with a few people at their
houses.”

For a large number of adolescent participants, their experiences were not only
limited to direct social contact but also included communicating with their friends
on the phone or computer.
 172 Stewart et al.

“Well I do spend a lot of time on the computer, just doing things like emailing
friends and talking to friends, like go on MSN [internet chat] because I have a
lot of friends that I don’t necessarily live close to.”
Most of the participants described how the experience of social participation
changed when they finished high school. Some experienced a positive change, such
as the young adult who talked about a change that occurred for her in her first year
of university.
“This year was a breakout year for me in terms of getting to know people . . .
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

Here in residence, there are a lot of people walking around. Even if you want
to go outside, I just go to the front desk, and they always talk with you, so that’s
pretty cool too.”
Other participants who had finished high school experienced a negative change:
“My friends all from high school, we’ve all got different agendas now, so we
hardly see each other . . .”
In summary, the participants in this study talked about a range of experiences in
relation to social participation. This first theme set the context for the other themes
that focused on the participants’ perceptions about the phenomenon of social par-
ticipation.
For personal use only.

Theme 2. Barriers and Supports

Barriers and supports to social participation were identified by the participants.
They could be personal in nature, or within the environment.

Barriers
Personal barriers identified by the participants included their physical limitations,
which affected their mobility, and for some it was their shyness. Most participants,
however, reported that most of the barriers to social participation were in the en-
vironment. These barriers included lack of physical access of buildings, systematic
and bureaucratic barriers such as specific designated areas for people with disabil-
ities in libraries or other public places, and a lack of snow removal in some set-
tings. These barriers limited their participation in exercise and sports programs, and
leisure activities with friends. The number one barrier identified by almost all par-
ticipants was transportation. Both public and alternative “disabled” transportation
systems influenced the participants’ ability to participate in social activities:
“. . . not being able to go where you would necessarily want to go at a particular
time. Like I never go anywhere beyond 12:00/12:30 [midnight] in a lot of cases
because of the limitations with transportation.”
Many participants spoke about having a limited amount of time to do the things
they wanted to do. Time became a barrier for many of them, particularly in relation
to transportation. They talked about always having to plan ahead, and not being
spontaneous and carefree in their social participation.
“Like I can’t just call my friends and say meet me wherever in an hour, because
I have to call them [wheelchair transportation] at 7 am the day before.”
 Social Participation of Adolescents 173

The other barrier identified by most participants was others’ attitudes toward
people with disabilities. Although they recognized that not everyone has a negative
attitude, those that do can influence social participation. One youth spoke about a
situation in her early teen years:

“I used to belong to Girl Guides . . . and they basically said that, because I
couldn’t walk long distances and it was too much of a trouble for them to be
pushing me in a wheelchair or something like that, I couldn’t come on the camp-
ing trips.”
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

Supports
Participants identified numerous supports that helped them participate in social
activities. Personal supports included having a social personality and confidence to
try new things. There were also environmental supports such as accessible buildings,
mobility aids and assistive devices, and social supports such as note-takers, scribes,
attendants, family and, of course, friends:

“. . . like you know days when I’m having a crappy day and I’ll call her and we’ll
just talk and it’s good to have people to, you know, talk to . . .”

One participant spoke about the importance of mentorship as a support, and in

For personal use only.

high school, he became a mentor for younger students with disabilities:

“I’m trying to help them out in any situation I can to show them what they need
to do to become more independent and do stuff like that.”

A couple of participants described how their views about supports changed as

they grew older. For example, one participant spoke about learning to accept sup-
port from an educational assistant (EA) to facilitate school success:

“My first two years [of high school] I decided I wanted to do [classes] on my own
and . . . I had marks in the 50s and 60s for the first two years, and then I decided
to start taking help from like an EA [educational assistant], so my marks shot up
the next year.”

The theme of barriers and supports demonstrates that there are numerous per-
sonal and environmental factors that can influence an adolescents’ social participa-
tion. The next theme of “trade-offs” describes how the participants dealt with these
various factors in their daily lives.
Theme 3. Trade-offs
Many participants recognized that there were trade-offs in their everyday expe-
riences – there were barriers and supports, problems and solutions, challenges and
opportunities – and they had to figure these out for themselves. Several participants
spoke of the trade-offs related to having a disability:

“. . . there’s so many setbacks in having a disability [but] there’s so many things

you gain from it. Gain so many opportunities with the different activities. You
meet so many different people . . .”
 174 Stewart et al.

“Some things about having my disability . . . I’ve been able to do things that oth-
erwise I don’t think I would have.”

Participants described different situations in which they faced trade-offs, to get

what was best for them at the time. For example, one participant described the
trade-off considered in using a scooter versus a walker:

“I like using my walker better. I’m stiff when I use my scooter for a long time, as
I’m sitting a lot. But if there is a lot of walking, I will use it [the scooter].”
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

One participant described the trade-off in going to an accessible high school that
wasn’t in the local neighborhood:

“Two ramps within the building and an elevator that’s accessible to all four floors.
[It’s] also the largest high school in the region, which has its advantages.”

Another participant described the trade-off of Individualized Education Plans

(IEP) at school:

“Some people don’t think they want an Individual Education Plan anymore, or
have this label, and I have always said it doesn’t do anything to me as a person,
it is just helping me so that I can get through school.”
For personal use only.

In summary, all participants talked about trade-offs that they had to consider in
their everyday lives if they wanted to participate in social activities with their peers
and family. These trade-offs led them to make important choices, which is the last
theme.
Theme 4. Making Choices
This theme threads throughout the previous three themes, as it describes the
concept of making choices and developing strategies to enable social participation
in activities that are important and meaningful. This was a developmental process
described by many of the participants, as they began to realize during adolescence
that they wanted to be in control of their own lives as they grew up and started to
look to the future. One participant described this process:

“I started to think, wow, I’m doing good in all my classes, I actually do have a
future and I’m going to be able to go somewhere in my life, so I’d better start
thinking about what and where I want to go with it and what I want to do.”

Making choices was related to the trade-offs the participants had to make each
day, to deal with the barriers and supports to social participation. Several partic-
ipants described how high school was a time of learning when and how to make
choices about asking for support versus doing it on their own:

“High school has really helped me mature that way, to realize that if I need some-
thing, then I need to tell people and tell them how to do it right . . . I was always
afraid to ask people to help me because I didn’t want to bother them and stuff
like that, but I have learned to be able to go up to people and just ask them for
help.”
 Social Participation of Adolescents 175

Another participant described how the acceptance of EA support at high school

affected his future:
“. . . when I went to high school I ended up getting my EA and going to regular
classes, but in that change I also noticed that . . . I’m going to have this become
the template of my life I might as well start now.”
And as they got older, participants noticed that the choices they made would
influence their future life:
“. . . and as you get older you learn certain things and realize that certain things
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

need to be done in order for you to have a full and complete life experience.”
Some participants recognized that they had to make some important choices
about social participation in future employment based on some of the tradeoffs
involved. For example, one participant described some considerations in making a
career choice:
“. . . because I couldn’t see myself doing a lot of running around, which is why
I am taking computer courses. Because I think realistically, whatever I do, it’s
probably going to be on the computer . . .”
Several participants felt that having a disability meant that it was important for
For personal use only.

them to be making their own choices

“. . . just because I’m in a wheelchair doesn’t necessarily mean that other people
make choices for me.”
One participant explained how the choice of participating in their daily commu-
nity and society could influence other people as well:
“Just being able to be out there and to contribute to society and help people and
I just want to make people realize that the stereotype that society has put on dis-
abled people is so not true.”
In summary, “Making Choices” was a theme that highlighted a developmental
focus on the future. Throughout the participants’ reflections on life experiences
(present or past), many of them talked about how the choices they had to make
shaped their outlook on their future.

DISCUSSION
This qualitative study emerged from a larger study “ASQME” about the experi-
ences and perceptions of older adolescents with CP in relation to mobility, exercise
and quality of life. The ten participants who were interviewed described a range of
experiences during their adolescence, all social in nature, which is typically expected
in the teenage years – school and extracurricular activities, volunteering, sports,
and “hanging out” with friends. Within the context of “experience” the participants
identified a number of barriers and supports that influenced their social participa-
tion. It was interesting to find that the most significant barriers were not perceived
to be their physical disability per se, or even the physical environment alone, but
 176 Stewart et al.

rather the lack of transportation, the amount of planning time they needed in or-
der to participate, and other people’s attitudes. This finding is supported in other
literature about the determinants of participation for children and youth with phys-
ical disabilities, (Schindlmayr, 2007; Shikako-Thomas et al., 2008; Stewart, 2009).
Many of the experiences reported by the participants address an important con-
cept described in the literature about participation – the dynamic interactions be-
tween person and environment. These interactions were evident in the trade-offs
described by participants. Most of these trade-offs involved the youths’ personal
perceptions of the barriers and supports that influenced their social participation.
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

As they matured, the participants were able to figure out the trade-offs that they
had to make. And as they took on the responsibility of making their own choices,
they could see that this would affect their personal futures as well as influence how
people in their environment would view them. Recent articles about the transition
to adulthood for youth with disabilities are reporting that the interaction between
person and environment is a critical component of health, function and disability
(Wang, Burns-McGrath, & Watts, 2010). The findings of this study provide support
for an interactional perspective of healthy functioning and transition planning for
youth with disabilities.
Participants reported that their choices were often guided by weighing the trade-
offs inherent in their social participation. For example, making the choice to utilize
a scooter or wheelchair was not a negative one for some teens, as it involved a
For personal use only.

trade-off of having more energy and mobility to participate in social experiences

with their peers. These choices and perceptions may be viewed differently by health
care professionals who may not necessarily regard wheelchair use as positive if their
primary goal for the client is “walking”. The complexity of the choices and trade-offs
made by adolescents with special needs also supports the importance of considering
the dynamic interaction of person and environment, as part of the developmental
journey facing all adolescents. Physical therapists and occupational therapists who
are part of the youths’ environment can support their clients learning how to make
informed decisions, by discussing the trade-offs inherent in the choices they are
making now and for the future. One of the important choices that participants in
this study identified was about the amount and type of support they need in order to
participate in social activities. This should be part of the discussion between health
care professionals and adolescent clients. Another recommendation for therapists
from these findings is to ask clients about the meaning of various experiences in
their lives, including mobility, exercise, and their quality of life, which should place
the focus more on choices and solutions, rather than solely on their problems.

LIMITATIONS
The findings of this qualitative study are based on the reports of 10 older youth with
CP, and does not permit any conclusions about the impact of age, gender, living situ-
ation or GMFCS level on social participation. Although the number of participants
was small, saturation of data was reached as no new information was emerging after
10 interviews. The research team chose to re-interview four participants to gain a
more in-depth understanding of the phenomenon of social participation from their
perspectives. It is possible that the participants’ perceptions were influenced by the
 Social Participation of Adolescents 177

focus of the original study on mobility and exercise, although every effort was made
to explore social participation through many different life experiences.

CONCLUSION
The findings of this study provide important information for health care profes-
sionals, educators, and support staff who work with children and youth with CP.
Adolescents with CP want to participate in social activities that are typical of their
developmental age group, but they often experience more barriers, and need more
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

supports, to participate. Some barriers and supports such as physical limitations and
confidence are at the personal level, but many are environmental, including trans-
portation and other people’s attitudes. These findings also indicate that a unique
developmental process for youth with CP involves learning about the trade-offs in-
volved in making choices and decisions that will help them to achieve what they
want in life. This process involves a dynamic interaction of personal and environ-
mental factors and requires further research to better understand the interactions
of all of the various experiences, barriers and supports for social participation and
other meaningful outcomes for youth with physical disabilities, as well as how youth
consider these issues to reach the decisions they make.
Physical therapists and occupational therapists can support youth as they move
through adolescence by asking what is meaningful and important to them, exploring
For personal use only.

all of the factors that are influencing their participation, and identifying the trade-
offs that they will have to negotiate in order to make positive, informed choices and
decisions as they transition into adult life.

Declaration of interest: The authors report no declaration of interest.

ACKNOWLEDGMENTS
This study was supported by a grant awarded by the Canadian Institutes of Health
Research (MOP-53258). The authors thank all study participants, and Lisa Havens,
MSW, RSW, who was a consultant to this project.

ABOUT THE AUTHORS

Debra A. Stewart, MSc. OT Reg. (Ont.), is an associate professor, School of Reha-
bilitation Science and Investigator, CanChild Centre for Childhood Disability Re-
search, McMaster University, Hamilton, Ontario, Canada. John J. Lawless, PhD,
MPH, is an assistant professor, Empire State College/SUNY, Utica, New York,
USA. Lorie J. Shimmell, MSc., OT Reg. (Ont.) is an assistant professor, School of
Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada. Robert
J. Palisano, PT, ScD, is a professor, Department of Physical Therapy & Rehabili-
tation Sciences, Drexel University, Philadelphia, PA, USA, and Investigator, Can-
Child Centre for Childhood Disability Research, McMaster University, Hamilton,
Ontario, Canada. Matthew Freeman, MA, is a research assistant in the School of
Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada. Peter L.
Rosenbaum, MD, FRCP(C), is Professor of Pediatrics, McMaster University and an
 178 Stewart et al.

Investigator, CanChild Centre for Childhood Disability Research, McMaster Uni-

versity, Hamilton, Ontario, Canada. Dianne J. Russell, PhD, is an Investigator, Can-
Child Centre for Childhood Disability Research, McMaster University, Hamilton,
Ontario.

REFERENCES
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

Carlson, D., & Mykelbust, J. (2002). Wheelchair use and social integration. Topics in Spinal Cord
Injury Rehabilitation, 7(3), 28–46.
Carter, M., McGee, R., Taylor, B., & Williams, S. (2007). Health outcomes in adolescence: Asso-
ciations with family, friends and school engagement. Journal of Adolescence, 30(1), 51–62.
Castle, K., Imms, C., & Howie, L. (2007). Being in pain: A phenomenological study of young
people with cerebral palsy. Developmental Medicine and Child Neurology, 49(6), 445–449.
Constas, M. A. (1992). Qualitative analysis as a public event: The documentation of category
development procedures. American Educational Research Journal, 29, 253–266.
Creswell, J. W. (1998). Qualitative inquiry and research design. Choosing among five traditions.
Thousand Oaks, CA: Sage Publications.
Dacey, J., & Margolis, D. (2006). Psychosocial development: Adolescence and sexuality. In K.
M. Thies & J. F. Travers (Eds.), Handbook of human development for health care professionals
(pp. 191–218). London, UK: Jones and Bartlett Publishers Inc.
Darling, N. (2005). Participation in extracurricular activities and adolescent adjustment: Cross-
For personal use only.

sectional and longitudinal findings. Journal of Youth and Adolescence, 34(5), 493–505.
Delp, L., Brown, B., & Domenzain, A. (2005). Fostering youth leadership to address workplace
and community environmental health issues: A university-school- community partnership.
Health Promotion Practice, 6(3), 270–85.
Donkervoort, M., Roebroeck, M., Wiegerink, D., van der Heijden-Maessen, H., & Stam, H.
(2007). Determinants of functioning of adolescents and young adults with cerebral palsy. Dis-
ability and Rehabilitation, 29(6), 453–63.
Dwyer, J. J., Allison, K. R., Goldenberg, E. R., Fein, A. J., Yoshida, K. K., Boutilier, M. A. (2006).
Adolescent girls’ perceived barriers to participation in physical activity. Adolescence (San
Diego): An International Quarterly Devoted to the Physiological, Psychological, Psychiatric,
Sociological, and Educational Aspects of the Second Decade of Human Life, 41(161), 15–75.
Everett-Jones, S., & Lollar, D. J. (2008). Relationship between physical disabilities or long-term
health problems and health risk behaviours or conditions among US high school students.
Journal of School Health, 78(5), 252–257.
Fredericks, J. A., & Eccles, J. S. (2006). Is extracurricular participation associated with beneficial
outcomes? Concurrent and longitudinal relations. Developmental Psychology, 42(4), 698–713.
Giarelli, E., Bernhardt, B. A., Mack, R., & Pyeritz, R. E. (2008). Adolescents’ transition to self-
management of a chronic genetic disorder. Qualitative Health Research, 18(4), 441–457.
Hanna, S. E., Rosenbaum, P. L., Bartlett, D. J., Palisano, R. J., Walter, S. D., Avery, L., et al.
(2009). Stability and decline in gross motor function among children and youth with cerebral
palsy aged 2 to 21 years. Developmental Medicine and Child Neurology, 51(4), 295–302.
Hutton, J. L., Cooke, T., & Pharoah, P. O. D. (1994). Life expectancy in children with cerebral
palsy. British Medical Journal, 309, 431–435.
Imms, C., & Dodd, K. J. (2010). What is cerebral palsy? In K. J. Dodd, C. Imms, & N. F. Tay-
lor (Eds.), Physiotherapy and occupational therapy for people with cerebral palsy (pp. 7–30).
London: Mac Keith Press.
Kail, R. V., Cavanaugh, J. C., & Ateah, C. A. (2006). Human development: A Life-span view.
Toronto, ON: Thomson Nelson.
King, G., McDougall, J., DeWit, D., Petrenchik, T., Hurley, P., & Law, M. (2009). Predictors of
change over time in the activity participation of children and youth with physical disabilities.
Children’s Health Care, 38(4), 321–351.
 Social Participation of Adolescents 179

Law, M., Petrenchik, T., King, G., & Hurley, P. (2007). Perceived environmental barriers to recre-
ational, community, and school participation for children and youth with physical disabilities.
Archives of Physical Medicine & Rehabilitation, 88(12), 1636–1642.
Livingston, M. H., & Rosenbaum, P. L. (2008). Adolescents with cerebral palsy: Stability in qual-
ity of life and health-related quality of life over one year. Developmental Medicine and Child
Neurology, 50(9), 696–701.
Oliver, K., Collin, P., Burns, J., & Nicholas, J. (2006). Building resilience in young people through
meaningful participation. Australian e-Journal for the Advancement of Mental Health, 5(1),
1–7.
Palisano, R. J., Shimmell, L. J., Stewart D., Lawless, J. J., Rosenbaum, P. L., & Russell, D. J. (2009).
Mobility Experiences of Adolescents with Cerebral Palsy. Physical & Occupational Therapy
Phys Occup Ther Pediatr Downloaded from informahealthcare.com by University of Southern California on 04/23/13

In Pediatrics, 29(2), 133–153.

Pendley, J., Kasmen, L., Miller, D., Donze, J., Swenson, C., & Reeves, G. (2002). Peer and fam-
ily support in children and adolescents with type 1 diabetes. Journal of Pediatric Psychology,
27(5), 429–438.
QRS International Pty. Ltd. (2000). N-Vivo. Cambridge, MA: QRS International. Retrieved
August 31, 2010, from http://www.qsrinternational.com/default.aspx
Rosenbaum, P. L., Livingston, M. H., Palisano, R. J., Galuppi, B. E., & Russell, D. J. (2007). Qual-
ity of life and health-related quality of life of adolescents with cerebral palsy. Developmental
Medicine and Child Neurology, 49(7), 516–21.
Rosenbaum, P. L., Paneth, N., Leviston, A., Goldstein, M., & Bax, M. (2007). A report: The defi-
nition and classification of cerebral palsy. April 2006. Developmental Medicine and Child Neu-
rology Supplement, 49, 8–14.
Sawin, K. J., Bellin, M. H., Roux, G., Buran, C. F., & Brei, T. J. (2009). The experience of self-
management in adolescent women with spina bifida. Rehabilitation Nursing, 34(1), 26–38.
For personal use only.

Schindlmayr, T. (2007). Youth living with disabilities. Briefing note on youth 2: Youth at
the United Nations. New York, NY: United Nations Program on Youth. Division for So-
cial Policy and Development. Retrieved September 1, 2010, from http://www.un.org/esa/
socdev/unyin/documents/briefingnotedisability.pdf
Shikako-Thomas, K., Majnemer, A., Law, M., & Lach (2008). Determinants of participation in
leisure activities in children and youth with cerebral palsy: Systematic review. Physical and
Occupational Therapy in Pediatrics, 28, 155–169.
Stanley, F. J., Blair, E., & Alberman, E. (2000). Cerebral palsies: Epidemiology and causal path-
ways. London: MacKeith Press.
Stewart, D. (2009). Transition to adult services for youth with disabilities: Current evidence to
guide future research. Developmental Medicine and Child Neurology, 51(Suppl. 4), 169–173.
Verbrugge, L. M., & Yang, L. (2002). Aging with Disability and Disability with Aging. Journal of
Disability Policy Studies, 12(4), 253–67.
Wagner, M., Cadwallader, T. W., Garza, N., & Cameto, R. (2004). Social acivities of youth with dis-
abilities. NLTS2 data brief volume3, issue 1. Minneapolis, MN: National Center of Secondary
Education and Transition, Institute on Community Integration (UCEDD), University of Min-
nisota.
Wang, G., Burns McGrath, B., & Watts, C. (2010). Health care transitions among youth with
disabilities or special health care needs: An ecological approach. Journal of Pediatric Nursing,
25(6), 505–550
World Health Organization (WHO). (2001). International classification of functioning, disability
and health. Geneva: WHO.
Yeo, M., & Sawyer, S. (2005). ABC of adolescence: Chronic illness and disability. Seventh in a
series of 12 articles. British Medical Journal, 330(7493), 721–723.
Young, N. L., Rochon, T. G., McCormick, A., Law, M., & Wedge, J. H. (2010). The health and
quality of life outcomes among youth and young adults with cerebral palsy. Archives of Phys-
ical Medicine and Rehabilitation, 91, 143–148.