PERSPECTIVES ON HEAD POSITIONING FOR CHILDREN WITH SEVERE CEREBRAL
PALSY WHO FIND IT DIFFICULT TO MAINTAIN AN UPRIGHT HEAD POSITION (CHILD,
PARENT, AND TEACHER)
C.Honeycombe, C.Davey, A. Ashburn
Detailed
understanding of a child’s head position and movement could help 1) identify
the optimal head position/positions for that child, i.e. those that maximise
comfort and function 2) assist with the selection of an appropriate management
approach 3) evaluate specialised seating.
Limited research has been conducted in this area and has been
quantitative in nature (e.g. Myhr 1991).
However the sole reliance on a quantitative approach is unable to
provide the complete picture. Obtaining
the views of the child, parent and teacher enables an understanding to be
gained of the lived experience and representation of head position and head
movement over a longer period and in a wider range of circumstances. Client centred practice supports the need
for the qualitative approach as the expertise, experiences and perceptions of
clients are recognised and respected, playing a central role in determining
therapeutic goals and outcomes (Law 1998).
The attainment of the upright head position is the criteria most often
used to evaluate head control (Bower Hulme 1987, Myhr 1991) and may not
represent the aspect of head control of most importance to the child, parent or
those who work with them. Little has
been documented on these aspects, therefore a small qualitative study was
undertaken as part of a wider study into head position and head movement. Interviews were conducted with children who
find it difficult to maintain an upright head position and their parents and
teachers. This presentation will focus
on the findings of the parents’ viewpoints.
PURPOSE OF THE STUDY
To
gain an understanding of head position difficulties from childrens’, parents’
and teachers’ perspectives.
METHOD
Therapists
at local schools identified children who experienced difficulty maintaining
upright head positions. Parents were
contacted by letter and invited to participate in the study. Semi-structured interviews were carried out
and the schedule covered such topics as, the usual head position, difficulties
or limitations as a consequence of head positioning, the importance of head position
for communication, and considerations in the management of head
positioning. Interviews were audio
taped, transcribed, and analysed by identifying themes from the transcripts.
STUDY PARTICIPANTS
Eleven
parents of children who had difficulty maintaining an upright position
participated, 10 mothers and 1 father.
The information related to 10 children, as both parents of one child
were present at the interview. All children
used either modular or customised special seating. Some participants were parents of children with visual
impairment/ profound learning disabilities in addition to their C.P. The age of the children ranged from 3-14
years.
FINDINGS
This
presentation will briefly describe four key themes.
1. Difficulties with head
positioning
All
children were reported to experience some difficulty with their head position
but the extent varied across the range of children and was not always
considered a major limitation. The
difficulties were described both in postural terms and the resultant functional
difficulties. Postural difficulties
encompassed limitations in the active maintenance of head position, suitability of the head position when rested
against a support or difficulty with control of both the head and other body
parts e.g. when the child experienced extensor thrust. “most
instances you have to nag her to keep her head up in the middle and she does it
straight away but it doesn’t stay there very long” Parent 10. “Yes you can see there is a gap behind his
neck, there is no actual support he is looking up instead of forwards” Parent 6
. There were also examples of a loss of control e.g. he just looses
control and his head goes back, he is unable to keep the head still, or unable
to adjust his head position if the head falls outside of his controllable
range.
Parents
spoke of head position affecting basic functions such as breathing, eating and
swallowing, and more interactive functions such as communication and use of the
computer. Eating was described as
difficult for all of the children who fed orally. For some children, swallowing was more difficult if the head was
extended, for others the position was
less influential during a swallow, however an upright position improved their
ability to contain food in their mouth.
“With his head extended we
have problems with the swallowing and noisy breathing”
“When she is eating we are
constantly saying lift your head up otherwise food dribbles out of the side and
she gets messy, but she can eat with her head to the side” Parent 10.
Difficulties
were noted with the maintenance of level eye gaze whilst working on a computer,
or posture maintenance whilst concentrating on work such as literacy and
numeracy. “to have to look in a straight position[when working on a computer] is
difficult for her”Parent 1.
Although
some of the positions adopted by children look as though they would cause
discomfort there was little evidence for this.
Some children were not considered to experience any discomfort from
their head position/s, others were thought to experience occasional discomfort
(as a consequence of muscular pain, the prolonged maintenance of a position, if
their head became stuck, or banged against the chair/head support). No parents considered their child to suffer
extreme discomfort as a consequence of any of the head positions that their
child adopted.
2. Impact of impaired head
control
Impaired
head control, particularly the inability to maintain an upright head, was not
always viewed as a major limitation to the child. It appeared to pose less of a problem where:
-
The off centre head position did not restrict ability to carry out activities.
“she compensates for it [non central position], she can do most things with her
head in that position”[referring to flexed and tilted]. Parent 10.
-
The child could adopt a position (other than upright) allowing good visibility
of the surroundings and the child’s facial expressions, but using less effort than an upright position
and consequently able to be maintained all day. For example a slightly flexed position.
-
Eye movements were fully used to minimise the amount of head movement required
or compensate for a flexed head position.
-
The child had flexibility of position and was able to adjust their head
position to meet different demands “she
does what suits her to make it so
that she can play or watch TV she knows what to do for each of these” Parent 1.
-
The child used the limited amount of time that an upright head position could
be achieved when most needed. At other
times a less demanding head position was adopted e.g. resting the head on the
shoulder.
3. Head position in
communication
Head
position was important for communication for most but not all children due to a
dependence on non- verbal communication.
Head positions were used directly where a specific position or movement
was used to indicate yes/no, gain attention, demonstrate emotion, or to enable
access to facial expression. For
example, “He speaks with his eyes and
facial expression” Parent 6. “It is
almost impossible to communicate with his head down”. One point on which
virtually all parents agreed was that people, who did not know the children,
were less likely to approach or communicate with them if their heads were down.
4. Parents approach to the
management of head position
Parents
described a number of approaches to manage their child’s head position
difficulties. For example, verbal
prompting or physical repositioning of the head was used to improve either
alignment or increase comfort.
Organisation of a stimulating environment to motivate the child to lift
their head. Parents also ensured that
they achieved good eye contact during communication by adjusting their posture
or waiting until the child was in a head up position. A number of the parents had strong views about the amount of
postural support required by their child, which did not always match the views
of the therapists. Some parents were
prepared to try the suggestions of the therapists whilst others refused to use
the seating equipment that had been provided.
Others were uncertain of the best approach to use as over the years
different therapists had offered conflicting opinions. Several parents were strongly against the
use of what they considered to be restraint straps e.g. headbands and felt that
these were too restrictive. Most
parents felt that “good positioning was important “ but also recognised a need
for limited time when position was unrestrained as part of the programme of
management. Some parents accepted a
degree of head position limitation, as they did not feel that a better position
could be achieved and were happy that the optimum position for their child had
been identified.
SUMMARY
It
has only been possible to present a small part of the interview data however it
illustrates the variety of experiences.
Although all children experienced some difficulty with head position, it
was not always a major limitation. It
is important to identify the individual priorities and preferences before
trying to address head position needs.
ACKNOWLEDGEMENT
Funding
was provided by the NHS Executive South East Region Training Fellowship
1. Myhr
U. & Lennart von Wendt Improvement of Functional Sitting Position for
Children With Cerebral Palsy. Developmental Medicine and Child Neurology
1991;33: 246-256
2. Law M.
Client-centred Occupational Therapy. USA: Slack, 1998.
3. Bower
Hulme J., Shaver J., Acher S., Mullette L., & Eggert C. Effects of adaptive
seating devices on the eating and drinking of children with multiple handicaps. The American Journal of Occupational
Therapy 1987; 41: 81-89.
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