Performing Bimanual Activities: The Experiences of Young

Persons With Hemiplegic Cerebral Palsy

Annika Skld,
Staffan Josephsson,
Ann-Christin Eliasson

This qualitative research study was designed to explore and describe the process of planning and performing
bimanual activities in young persons with hemiplegic cerebral palsy. Interviews with 10 persons individually
and four persons in a focus group provided rich information about their reasoning when confronting problems
as well as insight into how they view their situations. The data were analyzed using a comparative method. The
findings show that the participants had to make conscious choices about what would be the most effective
strategies to use for carrying out activities. The choices involved weighing different options to find the least
negative alternative. Even when able to find alternative strategies for performing the activity, the participants
were often dissatisfied with negative consequences related to the strategy. Examples of such negative consequences could be, for example, that they would have to accept a need for extra time, planning, or concentration, to perform desired activities. When selecting a strategy it was thus favorable to have a repertoire of strategies from which to choose. In conclusion, the planning and performing of bimanual activities turned out to be
a complex process influenced by a range of factors both internal and external to the person.
Skld, A., Josephsson, S., & Eliasson, A.-C. (2004). Performing bimanual activities: The experiences of young persons with
hemiplegic cerebral palsy. American Journal of Occupational Therapy, 58, 416425.

Annika Skld, OT, is Occupational Therapist,

Neuropediatric Research Unit Q2:07, Karolinska Institutet,
Astrid Lindgren Childrens Hospital, SE-171 76 Stockholm,
Sweden; [email protected]
Staffan Josephsson, PhD, OT, is Senior Lecturer,
Clinical Neuroscience Unit, Karolinska Institutet,
Stockholm, Sweden.
Ann-Christin Eliasson, PhD, OT, is Associate Professor,
Neuropediatric Unit, Karolinska Institutet, Stockholm,
Sweden.

ersons with hemiplegic cerebral palsy encounter many practical obstacles in

their daily lives because of decreased function in one arm and leg. The neurological symptoms are spasticity, paresis, sensory dysfunction, and coordination difficulties, all of which make it more or less difficult to control the arm, hand, or leg
movement adequately (Eliasson, Gordon, & Forssberg, 1991, 1992; Uvebrant,
1988). In addition, difficulties performing opposite movements with the two
hands at the same time (mirror movements) are often experienced (KhutzBuschbeck, Krumlinde Sundholm, Eliasson, & Forssberg, 2000). Posture is
altered, with the elbow and wrist often being flexed, the forearm pronated, and the
fingers more or less flexed into the hand on the impaired side (Szabo &
Gelberman, 1985).
The basic problems of hemiplegic hand function have been fairly welldescribed and explored. However, the consequences of this dysfunction on daily
life have yet to be described thoroughly. Success in daily activities can be related to
the match between the capabilities of the person and the demands that the activity and the environment impose on the person. When the demands exceed the
capability, a discrepancy in task performance occurs (Holm, Rogers, & Stone,
1998). Compared to other subgroups, persons with hemiplegic cerebral palsy
might be considered to have a mild handicap (Lepage, Noreau, Bernard, &
Fougeyrollas, 1998) and from clinical experience we know that many are fully integrated in society, following regular education, etc. The societal demands are essentially the same as for nondisabled people. Thus it can be assumed that for persons
with hemiplegic cerebral palsy, societal integration creates certain demands and

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expectations in terms of performance. How this potential

conflict between high demands and lowered capability is
solved, has notas far as we knowbeen described.
Occupation is more than just doing, it is also a way to
master the environment and simultaneously develop and
express oneself and create an identity (Christiansen, 1999;
Reilly, 1962). Occupational performance is a process in
which the human system, the task, and the environment
contribute to the assembly of behavior. This process has a
fluid and improvisational character (Kielhofner, 1995). The
behavior is considered to be functional if the personenvironment interactions enable people to achieve goals that
correspond to their views on quality of life (Holm et al.,
1998). A socially competent performance, however,
requires more than just performing the task, it also involves
fulfilling social expectations on how the task should be performed. Performing is thus a way to communicate oneself
to others (Goffman, 1963). Consequently, occupational
performance has the dual aim of achievement of results and
of performing competently within social expectations.
Persons with hemiplegic cerebral palsy often receive
occupational therapy intervention. Intervention by an
occupational therapist is focused on the area where the
taskenvironmental demands are greater than the persons
capabilities (Barrett & Kielhofner, 1998). A wide range of
intervention methods are used, with some addressing the
upper-extremity dysfunction itself and others the consequences it yields in the everyday life of the individual concerned. According to Fisher (1998), enhancing the use of
compensatory strategies is an important aspect in the occupational therapy intervention. Today there isto our
knowledgeno description of how persons with hemiplegic cerebral palsy carry out activities or how they solve
their occupational problems. Such knowledge might
strengthen the ability of the occupational therapist to help
clients find efficient alternative strategies for solving problems in everyday life. McCuaig and Frank (1991) agree that
there is a need for studies that describe patterns of adaptation by persons with disabilities. The aim of this study
therefore is to explore and describe the process of planning
and performing bimanual activities in young persons with
hemiplegic cerebral palsy.

Method
This study originates from an unexpected finding in a former study, designed to describe activity pattern following
upper-extremity surgery by people with hemiplegic cerebral
palsy (Skld, Ekholm, & Eliasson, 1999; Skld,
Josephsson, Fitinghoff, & Eliasson, 2003). Analyzing those
data, we found that along with the descriptions of how they

dealt with practical problems before and after surgery, the

participants described a general dissatisfaction with their
options for carrying out activities. Further analysis revealed
that the use of different strategies for performing activities
reflected a complex process of decision making involving
factors related to both the person and the persons surroundings. In order to further explore the conditions for
this process of choosing strategies for activity performance,
we collected additional data using a focus group method
(Krueger & Casey, 2000; Morgan, 1997). The study
reported here included analysis of interviews from the former study plus data from the focus group session.
The local ethics committee reviewed and approved the
study proposal. The participants were informed about the
intended use of the data and told that they could withdraw
from the study whenever they wished. To protect the participants confidentiality, all names have been replaced with
pseudonyms.
Participants
The criteria for participant selection in the initial interview
data collection had been formed with the aim to describe
activity patterns in relation to upper-extremity surgery. The
criteria were: having hemiplegic cerebral palsy, attending
regular education at the time of surgery, and having had
upper-extremity surgery at least 5 years ago. Following these
criteria, the participants were picked out from the surgeons
records of previous patients according to date of surgery.
Written invitations describing the research were sent to the
families. One week later a follow-up telephone call was
made to ask for participation. One person declined to participate in the study and was therefore replaced by the next
person on the list. Ten persons 12 to 24 years of age (one
male, nine females) agreed to participate and were interviewed individually. Five of the participants came with a
parent and the parent was then invited to take part in the
interview.
The more exploratory nature of the additional data collection (focus group) caused us to use a more purposive
approach to identifying participants for the focus group.
Apart from having hemiplegic cerebral palsy and attending
or having attended regular education, the informants needed to be able to generate a rich body of information about
their own experience of solving problems related to bimanual activities in different settings. We therefore asked local
occupational therapists to suggest candidates for the interview considering these criteria (Krueger & Casey, 2000).
The suggested participants were given a letter of invitation,
describing the purpose of the focus group, by their local
occupational therapist and asked for agreement for the
researcher to call them and ask for participation. Four per-

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sons 16 to 28 years of age (one male, three females) agreed

to participate in the focus group interview. Hand function
of the participants in both data collections varied from mild
dysfunction (pincer grasp is present) to moderate dysfunction (global use of the hand is present) (Claeys, Deonna, &
Chrzanowski, 1983).
Data Collection
The interviewsboth individual and focus grouptook
place in a hospital. The interviewer was an occupational
therapist (the first author), experienced in the area of childrens habilitation and hand rehabilitation, who had not
previously met the participants. In the first data collection,
the interviews were conducted individually, in conjunction
with an assessment regarding the study on upper-extremity
surgery (Skld et al., 1999). For practical reasons, the interview with one participant was partially conducted over the
telephone.
The aim of the first interviews was to find out how each
participant practically dealt with problems related to the
reduced function of the hand. The interviews were semistructured and an interview guide was used (Bogdan &
Biklen, 2003; Patton, 1986). A pilot interview was made
with an 18-year-old girl with hemiplegic cerebral palsy and
the interview guide was thereafter revised. The interview
guide consisted of broad questions, allowing the interviewer to focus on a subject area while maintaining freedom to
word the questions appropriately for each participant and
build conversation spontaneously. The pilot interview gave
us information on typical activities that might be difficult to
manage for someone with a hemiplegic cerebral palsy. We
asked the participants to describe how they performed these
activities. The activities in question were: picking up groceries and putting them into a basket, eating a hot dog and
drinking a can of Coke together while standing, carrying
full and open bottles, folding a piece of paper and putting
it into an envelope, holding a banana and peeling the first
strip, and eating with a knife and fork. Since habitual activities might be partly autonomous behavior (Kielhofner,
2002), during the interview, the participants were offered
the opportunity to handle the objects used in the above
mentioned activities. The purpose was not to observe the
action, but to facilitate the participants ability to accurately
describe their ordinary performance. The same activities
and objects were used for all participants. Thereafter, the
participants were asked about situations where the use of
the affected hand was avoided as well as activities that they
were unable to perform. The individual interviews ranged
from 1/2 to 2 hours.
The knowledge acquired through the individual interview analysis was used when planning the semistructured

interview guide used for the focus group. The main emphasis by the focus group interviewer was on the reasoning
employed when choosing strategies, rather than on strategies per se, and on how the participants themselves viewed
their choices. This new emphasis reflected a change in the
authors assumptions, based on knowledge gained in the
first data collection, namely that the process of choosing
strategies for occupational performance is decided by a
range of factors, internal as well as external to the person. In
the second data collection we therefore aimed at gaining
information that would complement the data from the first
data collection. The focus group interview lasted for 2
hours. All interviews were tape recorded with the participants permission and transcribed verbatim by the interviewer.
Data Analysis
Data analysis was guided by a comparative method
described by Bogdan and Biklen (2003). The process of
analysis started with reading and coding the transcripts to
define the main ideas discussed in the interviews. All
authors thoroughly read the transcripts to gain an overall
sense of the content. The ideas were discussed in relation to
how young people with hemiplegic cerebral palsy approach
occupational problems so that the authors could agree on
what was relevant to the study. In the second step, coding,
the first author developed a detailed coding scheme. The
codes were developed by identifying in each text part what
the participants were talking about. The coding scheme was
shared and discussed with the other authors for feedback,
which resulted in minor changes. Alternative ways of
understanding data were sought by consequently assessing
if there might be more than one way to understand the text,
and the same part of text could be assigned to more than
one code. At this stage, the coding scheme consisted of 19
codes with 76 subcodes (the subcodes represented variations on a code) grouped according to nine categories related to the purpose of the study. The following nine coding
categories were defined: specific strategies related to hand
use, specific strategies related to other parts of the body,
strategies related to the object, strategies related to interaction with other people, strategies that limit the performance, changing strategy, consequences from using a strategy, determinants of strategy selection, and feelings and
experiences related to the use of strategies. Each section of
text related to a certain code was identified and brought
together so that all parts of data relevant to the purpose of
the study could be read according to the codes and serve as
a background for further analysis.
The third step involved describing the findings by
organizing them into a coherent and meaningful whole.

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Whereas the sorting of the data into codes had given a

structured, descriptive understanding of data, the third step
of the analysis involved analysing similarities and differences between individuals. This comparison led to questions such as How can we understand that one girl likes to
use both hands, while another is very cautious to hide her
arm? We found the answer to this in parts of the text where
the two girls described how they perceived that others view
them and their disability. This way of working with data
yielded a new understanding. We found that the way of
using various strategies for activity performance could only
be understood when experiences, feelings, and values of the
individual as well as the environment in the specific situation, were considered. Based on this new understanding,
data were organized into two main themes with nine subthemes.

Findings
Two main themes emerged from the data analysis. The first
main theme was The dilemma of choosing among various
strategy options. This theme included the subthemes of (1)
estimating the feasibility of success, (2) estimating social
aspects, and (3) estimating personal aspects. The second
main theme was Some consequences will have to be tolerated.
This theme included the subthemes of (1) planning, (2)
taking extra time, (3) paying extra attention, (4) increasing
the workload on the rest of the body, (5) limiting choice of
task or task performance, and (6) the need for a repertoire
of strategies.
The Dilemma of Choosing Among Various
Strategy Options
The participants described a number of different strategies
used for approaching activities they could not perform in a
standard way due to their decreased hand function. We
were surprised, however, to learn that the strategies were not
always presented as positive options. Rather the participants
often described the strategies as something negative, something they resorted to when they could not perform the
activity in a standard way. It seemed that whatever strategy
participants chose, the strategies had some negative consequences that required consideration. The following story,
told by Sandra, illustrates her dilemma:
In school I am verythat is, my friend thinks I am very,
very lazy. I think thats what irritates her most. Because I
can butter my bread and she knows I can. But anyway, at
school I ask her if she can do it for me, or one of my other
friends, but she says You can do it. But itthere are
about 20 people coming to butter bread at the same time
and I need a lot of space. I cant hold my bread in my hand
and spread [the butter]. I have to put the bread down and

I need a lot of space.You see? And thenthen I dont

take any bread. But if shes going to have some bread, I ask
Could you do one for me too?That is the way it is. She
thinks that II know how to [butter bread] but I get so
stressed. I really need a lot of space. It takes time and I get
butter all over my fingers. It takes time to butter the bread.
It is possible, but it takes time.

The story of Sandra helps us understand that the various

strategies she has to choose from all have some negative
consequences. The first strategy requires extra time and
space and would also result in getting butter on her hands,
the second strategy, asking for help, would result in a conflict with her friend, and the third strategy would result in
not having any bread at all. Since none of the strategies
offers an ideal solution, this situation involves weighing all
options to choose the lesser evil. Sandras dilemma reflects
the complexity of the process of choosing strategies for
activity performance. Based on the entire data collection,
we found the following factors to influence the choice of
strategy.
Estimating the Feasibility of Success
The most obvious factor that the participants had to take
into consideration when choosing strategy was the match
between their own ability and the demands of the task.
Negotiating the intersection between ability and task
demands became evident in situations where an increased
demand of the task led to a change in the performance
strategy. For example, in a shop, the participants might hold
the basket with their affected hand to enable them to select
groceries with the noninvolved hand. However, if the basket grew heavy the strategy had to be changed. Then the
basket had to be carried in the noninvolved hand (thus hindering the use of that hand for selecting groceries).
Sometimes the intersection between the task demands and
ability was not discovered until the ability limit was exceeded, which resulted in some sort of failure. Sandra described
how she usually opens a banana with only one hand by
holding it by the stem and using a rapid whipping action so
that the stem breaks and the skin opens. But she remarked
that sometimes one was unlucky, one pulled too hard so it
[the banana] fell In the experience of other participants,
cutting food with both hands might result in the food slipping off the plate. The point of intersection between ability and task demands could also be intentionally challenged
in order to improve the persons ability, even if this could
evoke a conflict between the wish to try a more advanced
strategy and the risk of failure. Helene expressed her feelings
about this situation as follows: One should actually dare to
try to take the plate but at the same time one thinks now
Im going to drop it and then one doesnt dare try....I dont
always trust my own ability. She went on to explain that

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the fear of failure was particularly accentuated when handling objects belonging to others due to the risk for breakage. A safer strategy would therefore more likely be used in
those situations than when handling ones own objects.
The effectiveness of performance could be improved
either by using a strategy involving both hands or a strategy
involving only the noninvolved hand. Helene liked using
both hands because the movements are always better if I
can...use two hands, that is, if I can use a counterforce...
Sally described how she prefers to move a chair with two
hands instead of one: It works more easily and smoothly.
Using the noninvolved hand was however more commonly
regarded as the more efficient strategy. Several participants
remarked that if possible, only the noninvolved hand would
be used and the other hand was used only when necessary.
Estimating Social Aspects
Relationships with other people could influence the choice
of strategy. The participants stories reflected that they
would compare their own behavior to that of people without decreased hand function and the choice of strategy
seemed often related to a desire to appear normal. In front
of other people, the participants would either use their
affected hand more, in order to appear bimanual, or avoid
the use of their affected hand, in order to conceal it. For
example, some participants used both hands when eating at
a dinner party although they did not do this at home; Beata
did this even though it would hurt since her arm got tense.
Helene said, If...there are many people, then I want to use
both hands. Sally, 16 years of age, reasoned in a different
way. She said, People may look at me in a strange way. She
therefore avoided strategies where her decreased hand function would become apparent. She explained she would try
to disguise her arm when performing an activity. Helene, 20
years old, remembered her efforts to hide her impaired arm
during her teenage years and said, That was the worst time
of my life. Nowadays she finds it easier to show herself the
way she is: I would never be ashamed.
The social situation itself could also make it more difficult for the participants to use both hands in task performance. The perceived expectations of other people imposed
a stress that influenced the decision about which strategy to
use. Helene exemplified this: ...If people dont know me
and I am about to [do something]it takes more time,
then I might get stressed and then I choose to use my right
[noninvolved] hand. How others react to the use of a strategy seemed to be of great importance. Helene described
how a stranger reacted to her strategy of using her mouth
for holding:
When I was younger I used my mouth all the time. I
learned to stop using my mouth once when I went to take

some gloves from my pocket and I had a bus ticket...and

the bus driver said to me: Do you think Im going to touch
that ticket now? How disgusting! It was as if someone had
slapped my hand.

The participants described how asking for help could be a

way of managing challenging activities. However, data analysis revealed conflicting feelings on this matter. Asking for
help could be viewed as something positive. Helene, for
example, would take help from her friends when carrying a
tray: Sometimes it takes a lot of time to get to the table but
then I usually get assistance from one of my friends, Please
take this glass, because even if they only take the glass, that
is what I find most difficult. Asking for help might however also conflict with a wish for independence. When talking about buttoning her trousers, for example, Sandra said,
Id rather sit and struggle than ask for help. You feel
likeyoure 14 years old and you have to ask someone for
helpits kind of embarrassing Some of the participants
described feeling angry or insulted if they were offered help.
Accepting help could also interfere with getting the desired
result. Sandra was always dissatisfied when her mother
helped her with her hair: My mother always did it in the
wrong way, I thought. It was always too tight, too far forward or too far back, too lumpy Asking unknown people for help was mostly described as something one tried to
avoid. Helene accentuated this choice by first saying I
always ask [for help] and then correcting herself: I usually give [new] acquaintances a week [before explaining about
the disability] so that they can focus on other things than
that. Because if I do [ask for help] immediately...then there
will be too much Oh shall I help you?

Estimating Personal Aspects

Many of the considerations for choosing strategies were
related to other people or to the object; personal preferences
however were also taken into consideration. For example,
the use of the affected hand could influence the muscle tension in that hand. Both Helene and Beata found that using
their affected arm influenced their muscle tone. Beata related this to situations where she stretched out her arm, for
example when she tried to reach for something in the shopping cart, then the muscle tonus was diminished. She
could, however, also experience the opposite: more
demanding situations, like involving her affected hand
when cutting food, increased the muscle tension. Another
aspect reported by one participant was a personal wish to
use her affected hand and arm. Helene explained that she
liked to use strategies involving her affected hand: For my
self-confidence. I think its fun when I get this feeling of
using both [hands]. She was rather annoyed with herself

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The participants described how they needed to consciously

plan their performance of activities to avoid undesirable
outcomes. One example of this was planning the order in
which different tasks in an activity would take place. When
talking about having a Coke and a hot dog while standing,
Sandra said, I dont open the Coke first because then I will
spill it. Another example was to be prepared to manage
unexpected demands by deliberately keeping the noninvolved hand free. This could make it necessary to carry
objects (like a basket or some books) on the affected arm,
even though this was more difficult than carrying on the
other arm. Planning could also involve certain objects that
would facilitate performance. Tina described how she
would buy elastic shoelaces that dont require tying and
Anne used to choose trousers and shirts that button from
the left to the right thus enabling her to use her left (noninvolved) hand. A few technical aids or adaptations were
mentioned by participants. Helene, however, indicated that
using technical aids might require too much planning.
When the focus group was discussing that lids for the cup
are no longer handed out at McDonalds, someone suggested that one might bring a lid. Helene joked: Today Im
going to McDonalds so I have to bring a lid.

example, when zipping up a jacket it could be necessary to

start pulling with the affected hand while the noninvolved
hand stabilized, and then halfway up change hands so that
the noninvolved hand would pull and the other hand
would hold. Helene commented on this: The movement
doesnt become automatic, but first I insert [one part of the
zip in the other], then I stop in that position and then I
pull. Jenny gave another example, saying: If I have a bottle in this [the noninvolved] hand and I am to receive a
plate full of food in the left [affected] hand...that wouldnt
work, so I have to put the bottle down and change hands
and put the bottle in the left hand or something. Several
participants also explained that when eating, they could not
use the knife in the right hand and the fork in the left hand
all through the meal, which is typical behavior in Sweden.
Instead they had to change the cutlery between one hand
and the other several times since the noninvolved hand
must be used both to bring the fork to the mouth and to
cut with the knife. When it came to activities where the
affected hand could not assist at all, the tasks had to be done
in several steps instead of alternating between hands. For
example, when pouring a glass of water from the tap, it
might be necessary to first pick up the glass, then to put it
down to switch on the tap, then pick it up again to fill it
with water, then put it down to be able to switch the tap off,
and then pick it up again to drink. In the same way, the
basket might be held in the noninvolved hand when shopping, but each time an object was to be selected from the
shelf, the basket would have to be put down to free up the
noninvolved hand.
It might also be necessary to repeat one sequence of the
activity because of ineffective performance. Sandra
described her trouble when using a hair dryer. Holding the
hair dryer with the noninvolved hand, but being unable to
feel the wetness in her hair with the other hand, she had to
repeat the procedure of blowing her hair, putting down the
hair dryer, feeling her hair with the noninvolved hand and
then, if it was still wet, she would start all over again. It was
a similar procedure when rinsing the shampoo from her
hair using the handheld shower: I thought that now it
would be okay, I turned off [the shower], I felt my hair, but
no, the shampoo was still there. I just stood there and took
a chance that it would be washed out by itself, I didnt
rub

Taking Extra Time

Paying Extra Attention

The frustration associated with the use of various strategies

was sometimes related to the time needed for the performance of certain activities. It was often necessary to change
hand roles during the activity, which was time-consuming
and led to discontinuity in performing the action. So, for

The analysis showed that strategies that included the use of

the affected hand often demanded extra attention for the
performance of a particular movement. Helene said:

for not using her affected arm more than she did. She
described how, for example, she would lift a cup with her
affected hand and then, halfway to her mouth, she would
automatically change hands. This she found both irritating
and confusing: Why? When I got so far, why dont I do
what I should....Why do I often change hands?...I dont
understand why I do it, I cant explain. This personal wish
to use the affected hand was not expressed by any of the
other participants, and indeed, a rather contradictory view
was described by Beata, who generally disliked both using
and talking about her hand, and by Sally, who preferred to
keep her affected hand passive.
Some Consequences Will Have To Be Tolerated
The second major theme uncovered in the analysis revealed
that, often, the situation of choosing a strategy did not offer
any ideal options. Instead, most strategies had some negative consequences, which could not be avoided but had to
be tolerated.
Planning

I notice that there is such a great difference between me

and my friends, that I need a totally different level of con-

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421

centration than them, just to perform a simple movement

because to them it is an unconscious movement....I have to
help my hand like this: grab the drawer and pull out the
drawer.

If the person did not concentrate on the affected hand, the

object was either dropped or forgotten in the hand or, if it
was a soft object, squeezed too hard. Sandra described how
she once took out her chewing gum and put it in her affected hand. She then forgot that she was holding it until her
grandmother took her by the hand. It could also be necessary to use sight to compensate for the poor awareness of
the hand. Jenny was aware that when carrying, for example,
two bottles she must keep her eye on the bottle held by her
affected hand, otherwise she might spill it. If both bottles
are full I make sure I hold first one up and then I take the
other, but I need to keep my eyes on this one [the bottle
held in the affected hand] so that it doesnt spill, she said.
Increasing the Workload on the Rest of the Body
The strategies applied often raised the demands on the noninvolved hand. According to Helene, it was the most complicated task or heaviest object that was referred to the noninvolved hand, and Sally said, One tries to put as much
work as possible on the good hand....I can take...10 kilos on
my right arm. Catherine explained that she could take groceries from the shelf and put them into the basket using
only the noninvolved hand, even if the basket was hanging
on the forearm of the same arm. Furthermore, other parts
of the body might be used instead of the affected hand. One
participant described how a jar might need to be placed
between the knees to be opened and how a shopping basket
might need to be pushed on the floor by the foot instead of
being carried. The teeth might be used for opening a
banana or opening the lid of a plastic box and the teeth
could also be used to bite off part of the food held on the
fork instead of using the knife to cut it in pieces. Sandra
described how she would tilt the upper part of her body to
compensate for the lack of supination in her arm when carrying an open bottle in her affected hand.
Limiting Choice of Task or Task Performance
We could see that in activities that offer a number of
options, the participants sometimes limited their choice to
those options where the decreased function of the hand was
the least disturbing. Beata explained that, when in a restaurant, she preferred to order food that is easy to cut; she
therefore excluded the option of ordering a piece of meat.
Sandra omitted putting away the change when she was at
McDonalds. Instead, she left it on the tray until she was
seated even though she thought this gave rise to a risk of
someone taking it. In the same way, some of the partici-

pants would omit buying a Coke when having a hot dog

since they could not handle both objects at the same time.
It was sometimes necessary to omit the activity completely.
Jenny explained that when she was holding an object in her
noninvolved hand and someone wanted to give her a second object, she found it difficult to receive the second
object. She therefore tried to avoid these situations: I think
I normally choose to avoid getting into such a situation, Id
just say I couldnt do it. Lisa also had an experience of
avoiding an activity: When I was in first class at school and
we were doing a play, I did not dare go in there [on stage]
because I didnt want them to find out about my right hand,
so I stayed outside, and someone else had to play my part
instead. Sandra said, if I cant do it [cut the food] within a certain amount of time then I get angry, then I give up,
then I dont do it.
Yet another kind of limitation was seen when activities
could not be carried out according to the rules. Beata used
only one hand when serving in tennis and Catherine used
only one hand when serving in volleyball; they both commented that the activities should be done by two hands
according to the rules. Sometimes there was an experience
of breaking implied rules. In the canteen, Sandra ate her
potato unpeeled or she peeled it roughly even though this
resulted in half of the potato being wasted. She felt this to
be inappropriate behavior, but shortage of time led her to
choose this strategy, and she said, The others eat so quickly. Sandra was also dissatisfied with the amount of water
she consumed when using the handheld shower for rinsing
her hair since she could not do it in an efficient way. To
Beata it was necessary to use the wrong hand when shaking hands and she was very bothered about this since she
found it impolite to shake hands with the left hand. It was
apparent from the descriptions of the participants that these
limitations conflicted with the view the person had of her
or himself and that he or she wanted to give to others. In
order to explain their behavior, the participants at times
described themselves as uninterested or lazy.
The Need for a Repertoire of Strategies
So far, this study has shown that the choice of strategy can be
a difficult dilemma where the strategy with the least negative
consequences is sought. To have a range of strategies from
which to choose was therefore favorable. However, the ability to find strategies varied both with age and from person to
person. Helene stated that over the years she has learned to
use both more demanding and more effective strategies. Sally,
on the other hand, found it difficult to find alternative ways
to perform activities and described how her aunt had helped
her with finding out that pulling the chair out with two
hands was more efficient than when only one was used.

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July/August 2004, Volume 58, Number 4

There was also another benefit of having access to a

number of different strategies. Helene explained that if the
demands of the activity were raised, she might revert to
using an easier strategy for performing the activity. For
example, she normally puts on the toothpaste holding the
tube in one hand and the toothbrush in the other. If simultaneously talking to someone, she might go back to a strategy she used earlier, when she was a child, putting down the
toothbrush on a table and using only the noninvolved hand
to squeeze the tube. Thus the level of difficulty of the situation could be met by adjusting the strategy. Helene
described the need to constantly learn new strategies
according to the situation and along with her personal
developmentas a result of being barely able to manage
daily activities. I think that when you live in a kind of border country in the way we do, where we can do many
things, but not everything, then you are forced to learn new
things while growing up.

Discussion
This study has revealed the process of planning and performing occupations used by young people with hemiplegic
cerebral palsy. In this process, the participants used various
strategies for managing activities difficult due to their disability. The two main themes showed that, when choosing
a strategy, participants had to consider several factors and
most often the strategies yielded negative consequences that
they felt compelled to accept. Identifying a suitable strategy
for carrying out daily occupations therefore appeared to be
a matter of weighing the options in specific situations. This
concept of identifying a strategy as being a constantly ongoing process corresponds to the concept of a soft assembly
described by Kielhofner (1995) as a dynamic meeting
between the person, the activity, and the environment.
According to Kielhofner, it is from this dynamic meeting
that behavior emerges. A similar concept is described in a
study on the use of strategies by persons with poliomyelitis
syndrome, where the choice of strategies is aimed at finding
a balance between goals, capabilities, and environmental
demands (Thorn-Jnsson, Mller, & Grimby, 1999). In
the current study, the desire to find a balance in this dynamic process was apparent when the participants described
how they would act differently in different settings, considering factors both external and internal to themselves.
Occupational therapy literature often acknowledges the
gap between the ability of the person and the demands of
the task. This gap has been described by Holm et al. (1998)
as a performance discrepancy. What we found, though, was
that even if this performance discrepancy is bridged in one
way, by some kind of alternative strategy for performing the

activity, another discrepancy may remain, namely a discrepancy between the way the person wishes to perform the
activity and what performance is achievable. Even if the
participants found that they had made the best choice in a
specific situation, it was not always ideal from their point of
view since it yielded negative consequences.
Another way of describing the discrepancy between
wished and achieved performance would be as a lack of
compensation. To compensate means to be equivalent in
value to something (Websters New Twentieth Century
Dictionary, 1983). A compensation in this case would thus
be accomplished when the achieved performance and the
wished performance are equal in value to the person. In this
study, although the participants were able to achieve compensation to some extent, they did not reach full compensation, since to them, the achieved performance was not
equivalent in value to the wished performance. By naming
these strategies with the more neutral words alternative
strategies, the discrepancy between wished and achieved
performance could be understood as a remaining imbalance. Due to the reasoning above, we chose to use the word
alternative strategies throughout this study.
In this study, a strong desire to perform competently
was apparent. This desire can be understood from the
point of view that activity is not merely doing, it is also an
opportunity to express the self, and to create an identity
(Christiansen, 1999). The impression we think we give
others determines our self-appraisal to a high degree, so to
appear to be competent is of great importance
(Christiansen; Goffman, 1963). The participants described
their successes and failures in relation to the occupational
performance of nondisabled persons, so living under the
same conditions as nondisabled persons in spite of having
a minor handicap seems to influence how they value their
own performance. This situation seems to increase their
wish to conceal the disability. This can be related to what
Goffman names passing; if possible, people with a minor
handicap try to pass as having no handicap. The concealing of the disability may even be subconscious (Goffman).
In the current study, concealing the disability was given as
one of the reasons why an activity would be omitted. Yude
and Goodman (1998) have described this phenomenon in
children with hemiplegic cerebral palsy. They state that
when the person restricts her- or himself, it is difficult to
know whether the person is standing aside because of her
or his own free will or because of perceived expectations of
others. Such information is important for occupational
therapy knowledge and the phenomenon of omitting an
activity to solve the problem has been described in occupational therapy literature (Christiansen; Kielhofner,
2002).

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423

The wish not to be different may also explain why the

use of technical aids was rarely described by the participants
in this study, although an additional explanation for not
using technical aids may be the inconvenience of transporting equipment (Culler, 1998) and the need for preplanning
revealed in the current study. Another important observation in this study was that the participants attributed themselves with negative characteristics. They described themselves as being lazy or uninterested when explaining their
behavior. Goffman (1963) explained that one strategy of
passing is to claim a property less stigmatizing than the
original one to explain their own behavior.
This study has described how young persons with
hemiplegic cerebral palsy reason when finding solutions for
practical problems. This reasoning can be seen as striving
for adaptation. All humans strive to find a way to adapt to
their life situation. The aim of adaptation is to maintain a
useful relationship to the environment by adapting ones
behavior to the environment as well as adapting oneself to
forthcoming events (Nelson, 1988; Thorn-Jnsson,
2000). Adaptation to life is a challenge for any human
being, however, the presence of impairments and disabilities
may add extra challenges (Thorn-Jnsson). It may be
tempting to believe that a minor handicap would lead to a
minor difficulty, but the reasoning of the participants in this
study has shown that this may be a misleading presumption. It was apparent that participants often experienced
shortcomings in various activities, so that selecting a suitable strategy is therefore a constantly occurring event.
Whereas an alternative strategy for performing an activity
may be used by anyone in order to manage a difficult situation, to the persons in the study it is part of their everyday
life. According to Kielhofner (1995), the process of adjusting to or overcoming the challenges of disability may be
strongly influenced by the ability to make ones own choices. It can thus be speculated that having access to a range of
strategies and being able to choose how to perform in various situations might be a prerequisite for a successful adaptation.

Implications for Occupational Therapy

This study has suggested that an alternative strategy may be
useful and preferable in one situation but not in another.
Having a broad range of alternative strategies from which to
choose allows the person to adjust the strategy to the situation. For the occupational therapist it may therefore be
important to support the person in achieving competence
in finding several strategies matching the complexity of the
everyday situations (Fisher, 1998). This study has further
implied that in order to conceal the disability, it is common

also to strive to conceal problems yielded by the disability.

The problems encountered by young people with hemiplegic cerebral palsy may therefore easily be overlooked.
One challenge for the occupational therapist may be to
differentiate between activity performance that the person is
satisfied with and activity performance that is regarded as a
problem by the person. One example of concealing problems, mentioned by the participants, is when an activity is
excluded. McCuaig and Frank (1991) have stated that it
might be important to distinguish between situations where
excluding the activity is an alternative performance strategy
used to conceal the dysfunction from situations where the
activity is excluded due to lack of interest. Finally, the participants in the study have shown that being fully integrated in society and having hemiplegic cerebral palsy often
yield an experience of being exposed to the valuation of
oneself by others. It may therefore be of value to offer treatment to these persons in groups, creating meeting places
where they can share both experiences and practical advice
with each other.

Limitations and Directions for

Future Research
One limitation in this study may be that the participants in
the first group (individual interviews) were selected according to the criteria for a quantitative study. If the selection of
participants had been governed by the aims of the current
study, people specifically picked out as able and willing to
express themselves extensively and thus generate much data
in the interviews could have been recruited. In the selection
of participants for the second data collection (the focus
group), this aspect was acknowledged. Gender was not a
criterion, however, by chance, there were many females in a
row on the list that was followed for choosing candidates in
the first data collection. This happenstance resulted in only
two males taking part in the study.
Since many everyday activities are typically automatic
and subconsciously organized, one might question whether
or not activity-related processes can be explicitly described
by interviewees. In the current study, the problem of verbalizing such knowledge was met by keeping the discussion
on a practical rather than a theoretical level. Furthermore,
the participants in the individual interviews had the opportunity to physically handle practical objects. In the focus
group, discussion on a practical level also contributed to
achieving rich information while the participants explained
their performance to each other on a detailed level, comparing it and seeing differences and similarities.
Finally, understanding how persons with disabilities go
about solving their occupational problems is an important

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July/August 2004, Volume 58, Number 4

concern for occupational therapy (McCuaig & Frank,

1991). The circumstances of the situation along with the
consequences related to different strategies are important
considerations for clients decision-making processes. In
addition, findings from this study suggest a difference
between individuals related to how they find and use alternative strategies. Further exploration of the ability to use
various strategies might be useful for occupational therapists in their work with enabling individuals with hemiplegic cerebral palsy to carry out their daily occupations
successfully.

Acknowledgments
This project was supported by grants from Stiftelsen
Sunnerdahl Handikappfond, Norrbacka-Eugeniastiftelsen,
and The Swedish National Association for Disabled
Children and Young People (RBU).

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