Living with the Ilizarov frame: adolescent perceptions

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


Female 15 Juvenile chronic arthritis Tibia

Female 15 Bilateral congenital talipes

equinovarus

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



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

L. Martin et al.


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



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)

L. Martin et al.


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



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.

References

Bell D.F., Boyer M.I. & Armstrong P.F. (1992) The use of the

Ilizarov technique in the correction of limb deformities associated

with skeletal dysplasia. Journal of Pediatric Orthopedics 12, 283–

290.

What is already known about this topic

• The Ilizarov frame is a demanding and arduous treat-

ment programme.

• Young patients undergoing this type of surgical inter-

vention might experience adverse psychological effects

which seem self-limiting.

What this paper adds

• Innovative use of a qualitative dimension, alongside

quantitative methods, provided an in-depth perspective

of the impact of this treatment programme on the

adolescent patient.

• Psychometric measures used confirmed transitory ad-

verse psychological effects of living with the Ilizarov

frame, as reported in previous studies but the pro-

spective approach reduced limitations associated with

retrospective studies (such as recall bias), thus

strengthening confidence in the validity and stability of

the finding that adverse psychological effects associated

with the treatment programme are self-limiting.

• Implications for practice:

– more help should be given to young people to perceive

more accurately the reality of life with the Ilizarov

frame;

– using the experiences of the young people of living

with the frame may benefit other children going

through this treatment programme.

L. Martin et al.


Binney V. (1992) Coping with Leg Lengthening; A Guide for Parents

and Children. Sheffield Children’s Hospital Limb Inequality Ser-

vice, Harry Good Ltd., Sheffield.

Bonnard C., Favard L., Sollogoub I. & Glorion B. (1993) Limb

lengthening using the Ilizarov method. Clinical Orthopaedics and

Related Research 293, 83–88.

Burnard P. (1991) A method of analysing interview tran-

scripts in qualitative research. Nurse Education Today 11, 461–466.

Carlino H.Y. (1991) The child with an Ilizarov external fixator.

Pediatric Nursing 17, 355–358.

Eckhouse-Ekeberg D. (1994) Promoting a positive attitude in pedi-

atric patients undergoing limb lengthening. Orthopedic Nurse 13,

41–49.

Ghoneem H.F., Wright J.G., Cole W.G. & Rang M. (1996) The

Ilizarov method for correction of complex deformities, psycholo-

gical and functional outcomes. Journal of Bone and Joint Surg

American Volume 78, 1480–1485.

Herbert A.J., Herzenberg J.E. & Paley D. (1995) A review for

pediatricians on limb lengthening and the Ilizarov method. Current

Opinions in Pediatrics 7, 98–105.

Hrutkay J.M. & Eilert R.E. (1990) Operative lengthening of the lower

extremity and associated psychological aspects: the Children Hos-

pital experience. Journal of Pediatric Orthopedics 10, 373–377.

Jauernig S. (1994) Organising and implementing an Ilizarov pro-

gramme. Orthopedic Nurse 9, 47–55.

Kenwright J. & Cunningham J.L. (1993) Recent Advances in

Orthopaedics. Churchill Livingstone, Edinburgh.

Kovacs, M. (1985) The children’s depression inventory (CDI). Psy-

chopharmacology Bulletin 21, 995–998.

Morton A.A. (1998) Psychological considerations in the planning of

staged reconstruction in limb deficiencies. In The Child with a Limb

Deficiency (Birch J.G. & Herring J.A., eds), American Academy of

Orthopaedic Surgeons, Rosemont, IL, USA. pp. 119–204.

Nance D.K. & Mardjetko S.M. (1994) Technical aspects and nursing

considerations of limb lengthening. Orthopedic Nurse 13, 21–32.

Newschwander G.E. & Dunst R.M. (1989) Limb lengthening with

the Ilizarov external fixator. Orthopedic Nurse 8, 15–21.

Offer D., Ostrov E., Howard K.I. & Dolan S. (1992) Offer Self-

Image Questionnaire, Revised. Western Psychological Services,

Los Angeles.

Paley D. (1990) Problems, obstacles and complication of limb

lengthening by the Ilizarov technique. Clinical Orthopaedics and

Related Research 250, 81–104.

Ramker R.R., Lagro S.W., Van Roermund P.M. & Sinnema G.

(2000) The psychological and social functioning of 14 children and

12 adolescents after Ilizarov leg lengthening. Acta Orthopaedica

Scandinavica 71, 55–59.

Sagiv A. (2001) Planning treatment policy using the critical pathway

for school-aged children undergoing orthopaedic surgery with

Ilizarov external fixation. International Journal of Adolescent

Medicine & Health 13, 101–109.

Saleh M. (1994) The Ilizarov technique. In Children’s Orthopaedics

& Fractures (Benson M.K.D., ed.), Churchill Livingstone, Edin-

burgh, pp. 502–511.

Spirito A., Stark L.J. & Williams C. (1988) Development of a brief

coping checklist for use with paediatric population. Journal of

Pediatric Psychology 13, 555–574.

Tarczynska M., Stefaniak K., Karski T., Osiniak J. & Debkiewicz

L.K. (1999) Personality changes in children treated by the Ilizarov

device. Polski merkuriusz lekarski: organ Polskiego Towarzystwa

Lekarskiego 6, 317–321 (English abstract only reviewed available

at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd¼Retrieve&

db¼PubMed&list_uids¼10481544&dopt¼Abstract).

Thompson G.H. & Scoles P.V. (1996) Leg length discrepancy. In

Nelson Textbook Of Pediatrics, 15th edn (Behrman R.E., Klieg-

man R.M., Arvin A.M. & Neslon W.E., eds), WB Saunders,

Philadeplhia.

Young N., Bell D.F. & Anthony A. (1994) Pediatric pain patterns

during Ilizarov treatment of limb length discrepancy and angular

deformity. Journal of Pediatric Orthopediacs 14, 352–357.



Documents

Living with the Ilizarov frame: adolescent perceptions