living with the ilizarov frame: adolescent perceptions
TRANSCRIPT
ISSUES AND INNOVATIONS IN NURSING PRACTICE
Living with the Ilizarov frame: adolescent perceptions
Linda Martin BA RSCN RGN
Orthopaedic Ward Manager, Alder Hey – Royal Liverpool Children’s NHS Trust, Liverpool, UK
Michael Farrell BSc RGN RSCN DipHE PGCE
Lecturer/Practitioner, Alder Hey – Royal Liverpool Children’s NHS Trust, Liverpool, UK; and
Department of Nursing, University of Liverpool, UK
Karina Lambrenos BA MClinPsych PhD
Clinical Psychologist, Alder Hey – Royal Liverpool Children’s NHS Trust, Liverpool, UK
and Duria Nayagam BSc MCh FRCS
Consultant Orthopaedic Surgeon, Alder Hey – Royal Liverpool Children’s NHS Trust, Liverpool, UK
Submitted for publication 18 July 2002
Accepted for publication 24 April 2003
Correspondence:
Linda Martin,
Ward E2,
Alder Hey – Royal Liverpool Children’s
NHS Trust,
Eaton Road,
Liverpool L12 2AP,
UK.
E-mail: [email protected]
MARTIN L. , FARRELL M., LAMBRENOS K. & NAYAGAM D. (2003)MARTIN L. , FARRELL M., LAMBRENOS K. & NAYAGAM D. (2003) Journal of
Advanced Nursing 43(5), 478–487
Living with the Ilizarov frame: adolescent perceptions
Introduction. The Ilizarov technique has become an established method in the
treatment of children with serious skeletal disorders. Whilst the technique is
acknowledged for solving difficult conditions, the application of the external fixator
marks the beginning of an arduous treatment programme. Research has suggested
that undergoing such treatment can negatively impact upon the physical and psy-
chological well-being of the young person. Yet limitations in research design reduce
the usefulness of the findings, given in that most of the previous studies have used
retrospective, quantitative data collection approaches, often with a heterogeneous
sample population. We wished to gain a richer insight into the experiences of
adolescents living with the frame by drawing on both qualitative and quantitative
approaches.
Aims. To explore adolescents’ perceptions of the anticipated and actual impact of
the Ilizarov frame on aspects of daily activity.
Design. A mixed-method approach, using a prospective and longitudinal study
design.
Method. Fifteen adolescents undergoing the Ilizarov treatment were contacted at
several predetermined time-points during the course of their treatment to share their
perceptions of living with the frame. At several of these points semi-structured
interviews were used to ascertain their perceptions, whilst quantitative data were
gained at all time-points by adolescents completing a range of psychometric meas-
ures.
Findings. Adolescents found that life with the frame was not as bad as anticipated,
and they adopted a pragmatic approach, appreciating that this was something they
‘just had to get through’. Peers had a substantial role in supporting their friend to
adjust and cope with the frame. Psychometric scores were largely within normal
limits.
478 � 2003 Blackwell Publishing Ltd
Conclusion. This study suggests that, while the Ilizarov treatment is demanding for
adolescents, it is one that they can tolerate without sustained adverse psychological
impact.
Keywords: children, adolescents, Ilizarov procedure, psychosocial, ‘lived
experience’, mixed methods research, nursing
Introduction
The Ilizarov technique has become an established method in
the treatment of children with serious skeletal disorders and
soft tissue conditions (Kenwright & Cunningham 1993, Saleh
1994, Herbert et al. 1995). A main feature of this radical
technique is the application of an external frame that can
remain in place for up to 12 months (typical range
4–12 months).
Whilst the Ilizarov technique is acknowledged for solving
conditions which were hitherto poorly managed or even
untreatable, the application of this external fixator marks the
beginning of an extensive and arduous treatment programme.
This will involve, amongst other aspects, intensive physio-
therapy, weekly care of external pin sites and frequent
disturbance of home routine because of hospital visits and
admissions. Often, given the impact of the frame and
treatment, disruption of schooling and contacts with peers
and other social networks can be impaired. Given this
impact, it is considered that the treatment programme can
generate significant physical and psychological demands
upon the young patient and family (Binney 1992,
Eckhouse-Ekeberg 1994), with one research team advocating
that children undergoing this procedure should receive
psychological therapy (Tarczynska et al. 1999).
While there has been increased interest in the Ilizarov
method and its potential in paediatric orthopaedics, to date
there has been limited work to assess the psychological
impact that such treatments have on children. We therefore
conducted a study which specifically explored the impact of
the frame and treatment on an adolescent population
receiving care in a tertiary centre in the north west region
of the United Kingdom.
Literature review
Ilizarov technique
The Ilizarov fixator is an external limb device system
consisting of a series of rings and wires, which is used as
part of limb reconstructive and limb lengthening surgery.
During reconstructive surgery an osteotomy is performed,
and this creates a small break in the bone which is required to
provide a space potential for the promotion of bone growth.
The Ilizarov frame is then built around the affected limb. The
first stage of frame construction involves inserting a series of
thin tension wires, called Kirchner wires, through the bone to
be lengthened. The blood and nerve supplies to the soft tissue
are not compromised because of the small diameter of the
wires (Nance & Mardjetko 1994). These wires are then
attached to two or more metal rings placed around the limb,
and these rings are then connected to telescopic rods. These
rods enable the length of the whole frame to be extended.
Following application of the frame, the patient requires a
short period of bedrest to allow for resolution of surgical
responses before the process of limb lengthening/correction is
started. Approximately 7 days after application the telescopic
rods are lengthened by turning a series of nuts, a process
known as distraction. Through distraction the two ends of
bone are pulled a short distance apart. This creates a small
gap, which then stimulates bone growth to occupy the space
created (osteogenesis). Typically, the amount of distraction
exerted is 1 mm/day.
The Ilizarov frame remains in position for approximately
4–12 months, the time being determined by the total amount
of limb lengthening or correction required. The Ilizarov
technique can be used successfully to stimulate limb length-
ening by as much as 5 cm.
Use of the Ilizarov method
There is a significant body of literature about the use of
Ilizarov technique, which mainly explores surgical issues
related to the use and application of the frame. Increasingly,
research is focusing on the use of the frame and its impact on
clinical outcomes.
The benefits of the Ilizarov method have been established
(Bell et al. 1992, Herbert et al. 1995). Its role in the
management of complex paediatric orthopaedic conditions
is increasing, despite a high incidence of complications,
particularly in limb lengthening interventions (Paley 1990,
Bonnard et al. 1993). Given the complication rate, it is
considered imperative that careful selection of patients (and
their families) is ensured. Moreover, the need for the patient
Issues and innovations in nursing practice Living with the Ilizarov frame
� 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487 479
(and family) to be highly motivated and resilient, in order to
ensure compliance with a demanding care regime, has also
been stressed (Eckhouse-Ekeberg 1994, Nance & Mardjetko
1994, Thompson & Scoles 1996). Jauernig (1994) has high-
lighted the need for comprehensive multi-disciplinary support
to meet the needs of both child and family. The need for a well-
developed and multi-disciplinary approach to management has
led some to develop a critical care pathway for children and
adolescents undergoing this procedure (Sagiv 2001).
Insight into the physical care, pain management and
exercise regimes of children undergoing the Ilizarov proce-
dure has been a theme of earlier studies (Newschwander &
Dunst 1989, Carlino 1991, Nance & Mardjetko 1994,
Young et al. 1994), although work is now emerging that
focuses on the psychosocial aspects of the treatment (Morton
1998, Ramker et al. 2000).
Psychological impact of the Ilizarov method and other
external fixators
In a early study, Hrutkay and Eilert (1990) found that
children undergoing limb lengthening procedures using the
Wagner procedure showed psychological distress, with evi-
dence of depression and anxiety being common. In addition,
it was discovered that 25% of all children were either not
fully compliant with the care regime, showed signs of
regression, or became overly dependent on others to meet
their self-care needs.
Similar findings were also reported by Morton (1998), who
examined the psychological and behavioural reactions of
children and adolescents undergoing staged reconstruction
using the Ilizarov method. This perhaps confirms the
demands of such challenging treatment interventions. In this
study, of 56 children (age range 1–19 years), just under half
of the sample demonstrated moderate to severe deterioration
in mental health status, with five expressing suicidal ideation.
This deterioration in mental health was attributed to pain
and adjustment disorders secondary to the procedure. Mor-
ton concluded that limb reconstruction using external fixa-
tors generates a significant psychological burden, but
observed that this was transitory, remitting after appropriate
therapeutic intervention.
Morton’s findings seem to corroborate those of a study by
Ghoneem et al. (1996) of long-terms outcomes following
correction of limb deformities in adolescents using the
Ilizarov fixator. None of the children studied (n ¼ 45)
sustained any long-term psychological consequences. How-
ever, nine of 20 adolescents studied stated that they would
not be prepared to undergo the same treatment if it was
needed a second time. Their reasons included concerns over
the duration of the treatment, appearance of scars, and
distress related to complications. These findings may indicate
that the treatment process had such a significant adverse
impact on individuals that it diminished the benefits of the
perceived outcomes.
Stability of these findings seem to be further supported in a
more recent study of psychological and social functioning in
26 children undergoing limb lengthening using the Ilizarov
method (Ramker et al. 2000). The children were investigated
for evidence of depression and anxiety and, although some
had deviations in psychometric scores, most had no signifi-
cant change. With regard to aspects of daily functioning, it
was found that for some patients this had been compromised
while the frame was in place, most notably in relation to
sleeping and school work. However, for most patients any
detriment was not sustained following removal of the frame.
Although the research on psychosocial issues and the
impact of the external frame is useful, these studies have
methodological weaknesses which undermine their reliabil-
ity, the major weakness being that all studies used a
retrospective design. For example, Morton’s work was based
on a review of participants’ pre- and postprocedure psycho-
logical records. Previous studies have included children from
a heterogeneous age range, and failed to appreciate develop-
mental differences that might affect overall responses.
Another considerable weakness is the time of follow-up data
collection, after the initial procedure. For instance, the mean
duration of follow-up in the Ramker et al. study was
40 months, with a maximum of 67 months, while in
Ghoneem et al’s study the mean duration was 36 months,
with a maximum of 72 months. While the reconstruction
procedure has the potential to be a life-changing event, with
the ability to generate strong memory recall, these represent
significant periods in which the patient could be well exposed
to a range of other life events which could have affected their
psychological well-being. Ability accurately to recall experi-
ences over such lengths of time is also an issue, particularly
given that the treatment was often undertaken at a time of
considerable importance in child-adolescent development. In
addition, these studies have concentrated on data on psycho-
logical functioning, using a range of different psychometric
measures or questionnaires which force participants to
response to a restricted range of options. These measures
limit the ability to capture diversity and the impact of
individual experiences, and thus prevent participants offering
more in-depth responses which could yield a more insightful
perceptions of the impact of a given treatment intervention.
On the basis of such criticisms, it seems that prospective
studies are needed to ascertain more clearly the impact of the
external frame, whilst studies with a qualitative component
L. Martin et al.
480 � 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487
would be valuable in capturing individual experiences and
perhaps revealing factors which might account for successful
or impaired treatment outcomes.
Given the limitations of previous research, and based on
our own clinical observations, we were stimulated to under-
take a prospective study which specifically considered the
psychological impact of the external frame on adolescents
and explored their experiences of life with the frame.
The study
Research questions
The following questions were addressed:
• Does the application of an Ilizarov external frame on an
adolescent cause adverse alteration of scores in psycho-
metric testing for body image, depression and coping
response which will be indicative of psychological distress?
• What are adolescents’ perceptions of the anticipated
impact of the external frame on aspects of daily activity?
• What are adolescents’ actual experiences of living with the
frame?
Research design
To address the research questions we used a mix-method
approach, using a prospective, longitudinal study design.
Semi-structured interviews and administration of psychomet-
ric rating scales were used as the main data collection tools.
Internal academic review and external local ethics approval
were obtained for the study.
Sample
Patients aged 11–18 years undergoing planned application of
an Ilizarov frame within a 12-month period starting in 1999
were invited to participate in the study. Children undergoing
application of the frame for management of acute traumatic
injury were excluded, as were children who had severe
learning difficulties which might have affected their ability to
cope with the extensive research schedule.
Initial recruitment was undertaken by sending a letter to
potential participants awaiting the treatment, explaining the
purpose of the study and inviting their participation. Consent
procedures were completed during the immediate preopera-
tive period and in compliance with the guidelines approved
by the Local Research Ethics Committee. For children over
the age of 16, their written informed consent was obtained.
For those under 16, their written assent and their parent’s
written consent were secured.
Twenty-three adolescents were eligible for recruitment,
with 21 of these agreeing to participate. However, only
15 participants completed the study, given that two had
different operative procedures, whilst for two others the
planned intervention was cancelled because of changes in the
child’s condition. In one case, the researchers were not
available to collect data at the required points. In another,
the participant was withdrawn from the study because the
participant required early removal of the frame because of
onset of complications. Table 1 gives the participants’
characteristics and underlying condition for which applica-
tion of the external frame was needed.
Data collection
Two research methods were used in this study: psychometric
measures and a series of semi-structured interviews ascer-
taining patients’ perceptions of their daily experiences of
living with the Ilizarov frame.
Given that we were interested in capturing the diversity of
experience throughout the whole course of the treatment
process, we collected data at several predetermined time-
points, as shown in Table 2. Each of the time-points chosen
Table 1 Characteristics of participants
Sex Age Condition Site of frame
Male 17 Trauma Femur
Male 12 Blount’s disease Tibia
Male 14 Congenital Tibia
Male 18 Ollier’s disease Femur
Male 17 Trauma Tibia
Female 13 Congenital diaphyseal aclasia Left radius
Female 14 Congenital dislocated hip Femur
Female 11 Congenital talipes equinovarus Tibia
Female 15 Fibulae memimelia Tibia
Male 14 Septic arthritis Tibia and femur
Male 15 Trauma Tibia
Female 15 Juvenile chronic arthritis Tibia
Female 15 Bilateral congenital talipes
equinovarus
Tibia
Male 15 Trauma Tibia
Male 13 Trauma Tibia
Table 2 Time-points and types of data collected
Time point Data collected
Before operation Psychometric tests and interview
7 days after operation Psychometric tests
1 month after operation Psychometric tests
6 months after operation Psychometric tests and interview
1 month after removal of frame Psychometric tests and interview
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� 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487 481
was considered to be key landmark in the course of the
treatment.
Psychometric measures
The psychometric measures used in this study were the
Offer Self-Image Scale (Offer et al. 1992), a 10-item report
scale, exploring perceptions of body image. The Children’s
Depression Inventory (Kovacs 1985) was used to screen for
any evidence of depression whilst the Kidcope measure
(Spirito et al. 1988), a 10-item measure, was used to yield
data on coping responses used by the young person. Pre-
vious research has established the validity of the scales
used.
The Offer Body Image Scale indicates the extent to which
the adolescent has adjusted to their body image. Scaled scores
are obtained by converting raw scores to T scores, where the
standardized mean is 50, with a standard deviation of 10.
T scores below 40 are considered ‘possibly troublesome’, and
those below 30 as ‘unmanageable’. The Children’s Depres-
sion Inventory screens for depressive symptoms. A cut off
score of 10 suggests that the young person is reporting signs
of depression. Summated responses to the Kidcope measure
identify the use of a range of coping styles frequently used by
children and adolescents.
Interviews
The questions in the semi-interview schedule were derived
from findings of a small prestudy focus group held with three
participants who did not form part of the main sample and
who had recently completed the Ilizarov procedure. We used
questions which we anticipated we would ask in the main
study, and also invited the participants to share what they
believed to be key issues for them in their experience of the
Ilizarov frame. The aim the focus group was to sensitize
ourselves to issues considered important by these partici-
pants, and to use their feedback to inform the questions in
main study interviews.
All interviews were audio-recorded and conducted in a
setting of participants’ choosing, either in a quiet place in the
hospital or in the participant’s own home. To minimize bias,
and facilitate the comfort of participants, interviews were
conducted by one of two members of the research team who
were not directly involved in care delivery (MF & KL). Most
interviews were conducted with just the interviewer and
young person present; however, on three occasions a parent
was present at the young person’s request. One of the oldest
participants chose to participate by writing her responses
using the interview schedule as a open questionnaire rather
than having an interview. Given this participant’s sincere
wish to participate in the study, the fullness of the replies she
gave and the fact that we used the same procedures for
analysis of all data, we believed it was appropriate to include
her responses.
Data analysis
Quantitative data
Individual participant scores were produced for the Offer
Body Image and Children’s Depression Inventory. Offer
scores below 1 SDSD from the standardized mean are indicative
of problematic body image. Children’s Depression Inventory
scores above the test threshold of 10 are indicative of
depressive symptomatology. There were too few participants
for meaningful statistical analysis.
Qualitative analysis
Interview tapes were transcribed by one of the research team
(LM) into a standard word processing package, and then
imported into Atlas.ti (Scientific Software Development,
Berlin), a software package used for analysing qualitative
data. All transcripts were analysed by MF, an experienced
qualitative researcher.
A thematic categorical approach was used, using a process
advocated by Burnard (1991). Thus, descriptive codes where
attached to responses which indicated similar factors, behav-
iours, responses or experiences which were considered
important for understanding and appreciating the signifi-
cance of participants’ experiences. Following generation of
initial codes, these were then grouped into a thematic
structure which was thought to reflect common patterns
emanating from the data.
To confirm the findings, we invited all participants and
their family members to a feedback event to present the initial
findings and asked for comments and reflections on their
accuracy. Five of the young people and their family members
attended, and strongly supported the essence of the findings
shared.
Findings
Quantitative aspects
The Children’s Depression Inventory data showed that in the
preoperative period five participants scored above 10, the
threshold indicating signs of depression. At 7 days postoper-
atively this had decreased to four participants, while at
30 days five adolescents recorded a score above 10. Four to
six months into treatment, only two participants scored
above the cut off, and this fell to just one adolescent scoring
10þ after the frame was removed. One child demonstrating
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482 � 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487
apparent signs of depression was referred for psychological
evaluation but was found not to be depressed.
Body image was measured by a subscale of the Self Image
Questionnaire (Offer et al. 1992). Scores more than one
deviation below the standardized mean are indicative of low
body image. The numbers of adolescents scoring beyond this
threshold were as follows: six preoperatively; seven at 7 days
postoperatively; six at 30 days; six at 4–6 months and eight
after removal of the frame.
Preoperatively, the most used coping mechanism as indi-
cated by Kidcope scores was Emotional Regulation (this
would be manifested as some expression of emotional
response such as yelling). Problem-solving (thinking about
ways to overcome a particular difficulty) and Resignation
(accepting the situation in which they are involved) were
rarely used at this time. One week postoperatively five of
the coping styles, including resignation, were used equally by
the majority of the participants. These same ways of coping
were used at 30 days postoperatively, although Emotional
Regulation was the most used. At 6 months, Wishful Think-
ing (eg wishing to be someone or somewhere else) was no
longer used by many, and Cognitive Restructuring was the
most favoured way of coping. After removal of the frame,
Emotional Regulation and Social Support (being with friends)
were the coping styles most used, along with Cognitive
Restructuring. Coping by problem-solving was not reported
to any great extent. Table 3 shows the coping behaviours
used by the adolescents throughout the course of the study.
Qualitative aspects
Table 4 identifies the main themes emerging from the pre-
and postoperative phases. Three main categories emerged
from the interviews undertaken prior to application of the
frame, with the most dominant category being the partici-
pants’ perception that they expected the frame and treatment
process to have a total and all-encompassing impact.
All-encompassing impact
Interviewees anticipated that the impact of the frame and
treatment would be significant, affecting most aspects of
their lives from their own ability to undertake normal
activities of living such as maintaining hygiene, dressing,
sleep, mobility to the maintenance of satisfying and
sustaining social relationships, to concern about the impact
of the treatment on others, including family members. Not
unexpectedly, this was a cause of concern as reflected in the
following statement:
‘I think the two things that bother me the most are losing my
independence, and also being away from my friends and boyfriend’.
(Girl 18)
One features of this overall impact was the sense that the
treatment would mean that they had to put their ‘life on hold’
and would affect their ability to live life to the full, from
being able to participate in social and recreational activities
to delaying future plans:
‘Basically I have had to put my life on hold, as I was supposed to be
going to university this year and now I can’t…and I just hope
everything goes right for once, so I can get on with my life’. (Girl 18)
and
…Going to the clubs with my friends especially in the last week or so.
I’m going to miss that a lot because I know it’s definitely not going to
be like that after I’ve had this operation… (Boy 17)
Given this anticipated impact, the adolescents expressed a
wide range of emotions. For example, embarrassment at the
thought of requiring assistance with basic aspects of life
provoked the following comment:
My mum was telling me that I might need help with the toilet, but I
won’t have none of it. I’m going to the toilet by myself. But she won’t
listen – she says, ‘You are going to need help’. But no, I want to do it
Table 3 Pattern of coping mechanisms used by the adolescents
Coping
mechanisms used
Time point
Before
operation 7 days 30 days 4–6 months
After
removal
Emotional
regulation
� � � , �
Wishful thinking , � , – –
Cognitive
restructuring
, � , � ,
Social support , � , , �Problem-solving – – – , –
Resignation – � , , –
�, Most important (used by at least eight interviewees); ,, used by
eight or more interviewees; –, used by seven or fewer interviewees, if
at all.
Table 4 Themes emerging from qualitative analysis
Before application of frame After application of frame
• An all-encompassing impact • Actuality of experience
• Coping resources • Coping and getting on
• Treatment expectations • Concerns, feelings and reactions
• Support for coping
• Advice and recommendations
• Treatment experiences
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� 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487 483
by myself, especially going to the toilet. But getting up the stairs and
all stuff like that I don’t mind having help, but going to the toilet, I
have to do it by myself. I don’t care. (Girl 15)
Fears about the reactions of others and their own reactions
generated the following thoughts:
Yes, wake up in the morning and see all pins in through my leg. Just
be a bit…sick. (Boy 15)
Yes, like everyone’s going to be shocked when they see it, aren’t they?
They’ve hardly seen anything like that before. (Girl 15)
Coping resources and strategies
It was evident that the young people could identify a range of
resources and strategies that they could draw upon to support
them through what they imagined would be a difficult
experience. Assistance from family members was identified as
the most frequent type of support likely to be available.
However, anticipated peer support also featured extensively.
All participants stated what they perceived as the importance
of continued involvement and support by peers from their
own social networks, and one stated how his friends would
support him because:
I’ll be in a wheelchair so they’ll push me round and that, back to my
house and stuff. (Boy 13)
Whilst another shared how:
My friends will always be there, me mates will always be there, trying
to get me out. (Girl 15)
Although several participants indicated that they envisaged
receiving support from their peers, they feared that contacts
with friends would be inevitably reduced. Interestingly, some
could also identify an important support role that they
themselves could fulfil for some of their peers who seemed
concerned by the impending treatment, reflecting the mutual
process of support within peer networks. For example, one
boy remarked:
My friend grabbed me on my hand and said he didn’t want me to go
and have the operation because he was scared. I said, ‘Don’t worry…(Boy 13)
One of the main coping strategies was a sense of self-
resignation. Whilst several adolescents expressed concern
about what the total impact of the frame might include,
they could appreciate that this was to be expected and,
provided that the treatment had the desired outcome,
was something they were prepared to accept. We termed
this ‘pragmatic resignation’. Central to this perception of
pragmatic resignation was the need to accept that it would
take some time to get use to the frame but that this would
eventually happen. The following comments capture this:
I feel happy because I will get my leg fixed and it will be over and
done with the sooner we get started. (Boy 12)
I’m not scared – I am a little bit but just because like I’ve got to get it
done, do you know what I mean? Like, I’m scared and, like, little bits
of things and that. But I’ve got to get it done, so there’s nothing you
can do is there. You’ve just got to get over it and do it, haven’t you?.
(Girl 14)
Treatment expectations
With regard to preparation for and expectations of the
treatment, most participants indicated that they felt prepared
for what was to happen. However, most could give only a
brief description about what the surgery entailed. When
asked about the information they had been given, recall
focused on the length of the treatment, mechanical descrip-
tions of aspects of the frame and the pain likely to be caused,
as indicated in the following response:
Oh yeah, they’ve told me, like, how many pins are going to be in, and
the rings around, and how far it’s going to be from me knee to me
ankle and all that. And about wheelchairs, crutches. And, like, how
long I’m going to be in hospital for… (Girl 15)
After application of the frame
Six main themes emerged from the data collected in the
postapplication phase (See Table 3). One of the strongest
themes related to the actuality of the experience. To a large
extent, the impact of the frame on the young person’s life was
not anticipated. Many participants indicated that, apart from
the first month, they quickly adapted to life with the frame,
and that with the passage of time they were able to develop
confidence, regain a sense of independence and resume some
key activities of living, albeit in a curtailed way because of the
physical limitations of the frame. In part, the sense of
pragmatic resignation evident in the preapplication phase
remained evident within this theme, as illustrated in the
following extract:
They (other people) will end up asking questions – anyway, it’s just
something that’s got to be done. It’s not bothered me anymore.
Anyway, at first it was really, do you know, annoying me and just
getting to the stage I just wanted, I just didn’t want to go to school, so
I just didn’t want to leave the house. But then I just got used to it and
I’m alright with it now. (Boy 15)
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484 � 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487
Overall, there was a sense that the treatment experience was
not as bad or as extensive as had been feared.
Coping and getting on
This theme links with the previous one in that the young
person recognized the need just to cope and get on with
living with the frame. Internal coping responses were
positively influenced by the perception that one could get
used to the frame and, apart from needing to be a little more
careful, its overall impact was manageable and more positive
than anticipated. For example, while several participants
feared the pain associated with the treatment and their
ability to cope with this, they were surprised when this
expectation was not realized. This then promoted a sense of
confidence and overall coping, as reflected in the following
comment:
I was told, like, that it would hurt and all that, but it’s been better
than I thought it would have been. Because I was told it would hurt, I
was planning on it, like, being sore all the way through, but it’s not.
(Boy 13)
The same participant continued:
Most people would probably, like, think for the worst. Because
there’s pins going through your leg, they think, like, oh god, when I
get that on it’s going to be so bad. But you’ve got the epidural at first
and, like, you feel nothing, like, even when the physios come round.
It’s bound to be a bit sore, but you don’t feel anything…I was okay
like, going around in a wheelchair and getting on the bed, but I
needed help. But you get like a pain, like a little bit of pain. I wouldn’t
say like bad pain, like arghhhh. (Boy 13)
Another participant reported:
Yes, it’s gradual, it’s not something that happens all at once. It slowly
(develops) from the time when the frame’s put on to when it comes
off. You are constantly improving. But, em, I think as much as pain-
wise or getting used to it, I think it’s a lot more psychological and
confidence to what you can do while you’ve got it on. And as time
goes by you get more used to it, used to sort of pains you are getting
and what’s normal. (Boy 18)
Advice and recommendations
This category had two dimensions, one indicating the advice
that participants would give to someone else undergoing the
treatment, and the other concerning health professionals
involved in preparing young people for the treatment.
With regard advising other young people, all participants
indicated that they would advise someone to have the
treatment if it was required, telling them that ‘they would
be OK in the end’, as reflected by this young person:
That it is a really bad thing to get but it’s…if it makes your leg better,
if it heals your leg, then you have got to have it done because it’s for,
you know, for your own benefit, for your own good. (Boy 15)
With regard to health professionals, the need to include
preparation strategies emphasizing what the frame, actually
looked like were thought useful. Health professionals were
also reminded to listen sensitively to the concerns of the
young person and ensure that all preparation strategies were
undertaken in an honest way, as indicated in the following:
And also explain what is sort of natural, you know the pain might be
a bit bad at times and you’ll have highs and lows, but a good basis of
understanding help, em, especially takes a lot of the worry away, I
think. (Boy 18)
Discussion
The findings of this study confirm those of some others
which, despite methodological weaknesses, conclude that
the impact of the frame and treatment is less than anticipa-
ted (Ghoneem et al. 1996, Morton 1998, Ramker et al. 2000).
While clearly the young person is challenged by this treat-
ment, any adverse psychosocial impact appears transitory.
Interestingly, while there is some of the qualitative evidence
seems to match the results of the psychometric tests, there
also appear to be differences. For example, a major theme
emerging from the qualitative data both prior to and during
the treatment was a sense of resignation, where the young
person accepted that in order to resolve their condition they
had to tolerate this treatment. However, the use of resigna-
tion as a coping strategy prior to surgery was not evident
from the psychometric data. Similarly, the qualitative com-
ponent indicated the importance of social support during the
treatment process, but this did not feature as strongly in the
psychometric results. One possible explanation could be that
the questionnaires were compiled by researchers, but partic-
ipants then interpreted the questions in ways not thought of
by adults. This incongruence could account for the disparities
found between the questionnaire and the qualitative data.
Thus, the use of the qualitative approach, drawing on the
words and perspectives of the adolescents themselves, offers a
richer insight into their experiences which might not other-
wise be reflected if solely quantitative measures were used.
Unlike Ghoneem et al.’s study, our findings suggest that the
young people’s interest in and hopes for the outcome were
sufficiently strong or attractive enough to justify tolerating
this difficult procedure. While the impact of the treatment
Issues and innovations in nursing practice Living with the Ilizarov frame
� 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 43(5), 478–487 485
was demanding, participants realized that the treatment was
essential in achieving their long-term aim of full recovery.
Thus, they were resigned to the fact that this was a necessary
means to an end. The fact that resignation was used as a main
coping mechanism possibly accounts for the lack of overt and
sustained psychologically morbidity, confirming the transit-
ory nature which other studies have found (Morton 1998,
Ramker et al. 2000). In addition, the fact that most of the
young people adapted quickly to life with the frame and were
able to resume some if not all activities, promoted an overall
sense of minimal adverse impact which was outweighed by
the expected outcomes.
Implications for practice
The findings have several implications for health profession-
als working with this group of children. Firstly, efforts should
be directed to helping young people perceive more accurately
the reality of life with the frame. Greater use of the
experiences of other young people living with the frame
could be beneficial, and perhaps video diaries could be used
to share this.
The treatment phase is extensive, and clearly there will be
ups and downs for the young person throughout its course.
However, there may be some benefit in investing more
support effort during the first month as it seems that this is a
key phase in which the young person not only has to adapt
physically to life with the frame, but also has to make
psychological adjustments, particularly in relation to body
image. Perceptions of dependence, and the impact on family
and social relationships. Interventions to promote problem-
solving abilities might be useful to encourage appropriate
supportive and self-management strategies.
The study has confirmed the importance of peers in
supporting these adolescents, and there is a significant
challenge for health professionals to explore ways in which
this can be harnessed in an effective way throughout the
whole treatment experience for the benefit of the young
person. In the acute in-patient phase, peers support could be
endorsed by encouraging flexible visiting times, with mani-
pulation of the environment where possible to promote
privacy for the young person.
While this study has been useful in exploring the impact of
the frame on adolescents, further work is needed to discover
other dimensions of the impact of the treatment process. For
example, there is little work exploring the impact on family
carers and whether this can affect their relationship with the
young person receiving treatment, whilst more detailed
studies could explore body image and peer interactions, and
problem-solving strategies.
Conclusion
This study suggests that, while the Ilizarov treatment is
demanding for adolescents, it is one that they can tolerate
without sustained adverse impact on psychological and
psychosocial functioning. Insights into the impact of the
frame and treatment on daily life reveal a strong sense of self-
resignation and point to the important role that peers can
have in supporting adolescents undergoing this treatment
programme.
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• Young patients undergoing this type of surgical inter-
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• Psychometric measures used confirmed transitory ad-
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