Disability and Rehabilitation, 2010; 32(9): 729740

RESEARCH PAPER

Experiences of psychosocial adjustment within 18 months of

amputation: an interpretative phenomenological analysis

ROGER HAMILL1, SUZANNE CARSON2 & MARTIN DORAHY3

1
Regional Acquired Brain Injury Unit, Musgrave Park Hospital, Belfast Health & Social Care Trust, Belfast, UK, 2Regional
Disablement Services, Musgrave Park Hospital, Belfast Health & Social Care Trust, Belfast, UK, and 3Department of
Psychology, University of Canterbury, Christchurch, New Zealand

Accepted August 2009

Abstract
Purpose. To explore participants experiences of psychosocial adjustment within 18-months following amputation in a
manner that can inform further research and clinical practice.
Method. Transcript data from eight semi-structured interviews were analysed using Interpretative Phenomenological
Analysis.
Results. Three super-ordinate themes emerged from the analysis: (1) pre-amputation decision-making process and control,
(2) renegotiation of self-identity and the struggle to accept a new disabled identity, and (3) adjustment as a social process.
Conclusion. This research furthers understanding of pre-acute, acute and post-acute adjustment processes from the insider-
perspective of individuals who have experienced amputation. A picture emerged in which individuals adjusted to amputation
and its sequelae through a process of renegotiation of self-identity that was mediated through a wide range of decisional,
informational and social factors. Suggestions for clinical practice and further research are discussed.

Keywords: Amputation, psychosocial adjustment, interpretative phenomenological analysis

Introduction number of studies designed to examine the role of

Psychosocial adjustment has been defined as the
adaptive response of an individual to significant life
change [1]. Amputation is typically associated with
such significant life change, and the manner in which
an individual responds to the psychological and
social consequences of amputation is a key factor in
determining rehabilitation outcome [25]. Although
each individuals response is unique, common
psychosocial sequelae may include depression, anxi-
ety, post-traumatic stress symptoms, body image
issues, stigmatization and changes in self-identity
and social functioning [3,69]. It is widely acknowl-
edged that the process of adapting to these con-
sequences is mediated by a complex interaction of
physical, socio-demographic and psychosocial vari-
ables [3,7]. Historically, more research has focused
on the adjustment impact of physical variables, but
over recent years there has been an increase in the
socio-demographic and, particularly, psychosocial
factors [10]. The 2004 special issue of Disability
and Rehabilitation [11] focusing on psychosocial
perspectives on amputation and prosthetics repre-
sents a notable contribution in this regard. From this
and other sources, a picture emerges in which the
adjustment impact of some variables has more
empirical support than others.
For instance, with regards to physical factors, the
cause, level and number of amputations have
generally not been found to predict subsequent
levels of depression, anxiety, activity restriction and
social functioning [6]. By contrast, there is strong
empirical evidence that phantom limb pain (PLP)
and residual limb pain (RLP) are significantly
correlated with poorer psychological and social
adjustment [2,12]. Similarly, with socio-demo-
graphic factors, some studies have found that age is
a significant factor, with children and older adults

Correspondence: Roger Hamill, Regional Acquired Brain Injury Unit, Belfast Health & Social Care Trust, Clinical Psychology, Musgrave Park Hospital,
Stockmans Lane, Belfast, BT9 7JB, United Kingdom. E-mail: roger.hamill@belfasttrust.hscni.net
ISSN 0963-8288 print/ISSN 1464-5165 online 2010 Informa UK Ltd.
DOI: 10.3109/09638280903295417
730 R. Hamill et al.
tending to adapt better to amputation than adoles-
cents and younger adults [13,14]. However, the
evidence for the impact on psychological adjustment
of gender, ethnicity and socio-economic status is
much less persuasive [6].
The adjustment role of key psychosocial factors is
more clearly supported in the literature. For in-
stance, the use of an active coping style [7], down-
ward social comparison [3], dispositional optimism
and perceptions of control over disability [15], are all
significantly correlated with improved adjustment
outcomes. Similarly, efforts to seek out positive
meaning in the amputation experience [16], and
having a strong balance confidence [17], have been
found to be highly adaptive. Social support and
integration are also key factors in the adjustment
[13,18]. However, it is crucial that any help is
perceived to be supportive by the individual receiving
it [6], and that social integration emphasises the
quality of relationships over the quantity and
structure of social networks [19].
The relative strength of empirical support for the
adjustment significance of psychosocial variables has
led some researchers to suggest that, with the
exception of PLP and RLP, physical and socio-
demographic factors contribute little to explaining
the variance in individual responses post-amputation
[2]. However, others have argued that psychosocial
adjustment should be viewed in more holistic terms
as the interaction of various factors, including
physical and socio-demographic variables [7]. Either
way, it is notable that the vast majority of research in
this area has been from a quantitative perspective. If
it is the case that the most significant variables are
psychosocial processes relating to an individuals
cognitive strategies, perceptions, attributions, mean-
ing-making, and social relationships, then qualitative
studies, with their emphasis on understanding the
subjective experience of persons-in-context, would
seem ideally placed to contribute to the research
enterprise. At the same time, if an individuals
adjustment response is best understood as being
determined by a complex web of multiple factors,
then qualitative approaches are also well suited to an
in-depth exploration of the interconnected elements
of such processes [20].
The use of qualitative methodologies in this area
also allows an idiographic focus. It has been argued
that referring to individuals in terms of their
disabled group membership may encourage a
process of deindividuation in which they are erro-
neously labelled with the negative characteristics
stereotypically applied to the entire group by many
non-disabled individuals [21]. This negative funda-
mental bias [22] is best challenged when the person
living with amputation becomes individually con-
textualised, as might happen, for example, when the
person relates to another on an individual friendship
basis [5]. Because of its focus on understanding
participants at an individual level and placing them
as persons-in-context [23], qualitative research can
promote the individuation of people living with
amputation, and thereby challenge discrimination.
Despite the potential benefits of using qualitative
methods to explore the adjustment experience of
individuals following amputation, the number of
qualitative studies in this area remains small [2428].
However, such studies demonstrate the unique
contribution that qualitative approaches may make
to the understanding of adaptation. For example, in
his analysis of 35 semi-structured interviews with
individuals who successfully adapted to prosthesis
use, Murray [26] found that the presence of PLP was
a significant factor in promoting the embodiment of
prostheses as corporeal structures. This unexpected
finding a clear demonstration of the elicitation role
of qualitative research suggests that the presence
of PLP in the early stages of rehabilitation may be
adaptive in at least one important respect, with
obvious clinical implications.
In previous qualitative studies of adjustment
following amputation, participants were interviewed
several years after amputation. Although the
evidence for a significant impact on adjustment of
time-since-amputation has been described as weak
by one source [2], others have reported findings that
are more consistent with the hypothesis that adapta-
tion should generally improve with time [6,7]. Given
the rehabilitative significance of the initial period
after amputation, this study explored the adjustment
experiences of individuals within 18 months of
amputation. The aim of the study was to give voice
[29] to the participants insider perspective [30] on
adjustment in a manner that may inform future
research and clinical practice.
Method
Study design
As the aim of this study was to explore the
interconnected elements of adjustment experience
from the perspective of individuals living with
amputation, a qualitative design was employed
[22,26]. Specifically, an Interpretative Phenomeno-
logical Analysis (IPA) [30] methodology was
adopted because of its emphasis on understanding
the subjective experience of persons-in-context [29],
and its suitability for exploring issues of great life-
significance that unfold over time [31]. IPA is
influenced by phenomenology in its focus on
subjective experience, but also by symbolic inter-
actionism in its understanding that the meaning

ascribed to experience by individuals can only be
approached via a process of interpretation [30]. It is,
(1) idiographic because it focuses on meaning at an
individual level, (2) inductive because it eschews
specific hypotheses to enable the emergence of
unexpected themes, and (3) interrogative because it
strives to create a dialogue between the generated
data and extant theory and research [32]. Ethics
approval for this study was provided by the Office for
Research Ethics Committees in Northern Ireland
(OREC-NI). The lead author has had no clinical or
personal involvement with amputation/prosthetic
services beyond the current study which was
completed as part of his doctoral training in Clinical
Psychology.
Participants
In order to best represent the phenomenon under
investigation [33], participants were purposively
sampled from the active patient list of a NHS
prosthetic service provider in Northern Ireland,
UK. Of the 10 patients invited to participate, 8
agreed to attend for interview at the prosthetic clinic
(three females and five males). The three inclusion
criteria were, (1) all participants were aged 18 years
or over, (2) all had an amputation within the previous
18 months and (3) all were assessed by a consultant
clinical psychologist as being psychologically well
enough to participate in the study. In order to
preserve anonymity pseudonyms have been used
throughout.
Seven of the participants had unilateral lower-
extremity amputations (three above knee and four
below knee) and one had a unilateral upper-
extremity amputation (above elbow). Vascular dis-
ease was the cause for four of the participants
amputations, trauma for three and synovial chon-
dromatotis for one. For two of the participants with
traumatic aetiology, amputation occurred several
years subsequent to the initial injury as a conse-
quence of secondary infection.
With the exception of one individual who was a
rehabilitation inpatient at the time of the interview,
all of the participants were living at home. All of the
participants had a stable employment history prior
to their amputation or the onset of the underlying
medical condition. None had returned to work
since their amputation procedure, although one was
due to return within 1 week of the interview, and
two were recently retired. All of the participants
were white, native to Northern Ireland, and spoke
English as their first language. Participants were
given travelling expenses but otherwise received no
financial remuneration for involvement in this
study.
Psychosocial adjustment following amputation 731
Interview procedure
Data were collected via semi-structured interviews,
the exemplary method for data collection in IPA
[34]. Each participant attended for one interview
lasting approximately 1 h. A single interview proved
sufficient to achieve data saturation while minimising
the time commitment from each participant. Each
interview was audio-recorded and subsequently tran-
scribed verbatim by the interviewer, who also noted
key observational data. A provisional interview sche-
dule was used to guide, but not prescribe the topics
covered during interview. The schedule contained a
mixture of open questions (e.g. What expectations did
you have about life after amputation?), and closed
screening questions with follow-up open probes (e.g.
Have you experienced phantom limb pain since your
amputation? If so, what has that been like for you?).
Unplanned follow-up questions were also used to
allow for the emergence of unanticipated themes. The
interview schedule is available from the lead author to
allow the interested reader to judge how the questions
may have impacted the participants answers [31]. All
of the interviews were conducted by the lead author a
white, 35-year-old male with no visible disabilities.
The lead author was not known to any of the
participants prior to the research interviews.
Analysis
In IPA it is assumed that a participants account at
interview represents an attempt to make sense of their
personal and social world [29]. However, it is
acknowledged that the participants account is un-
avoidably filtered through the researchers own beliefs,
attitudes and experiences [30,35]. Consequently,
analysis involves a double hermeneutic [32] in which
a meaningful narrative is co-constructed between the
participants phenomenological account and the
researchers interpretations of that account.
In this study, Smith and Osborns [34] suggestions
for data analysis were adopted. First, a single transcript
was reviewed from a psychological perspective for
emergent themes, with particular attention being paid
to the issues of most significance to the participant
[29]. These themes were then collated and categorised
into groups of connected material under headings
representing the superordinate theme of each cluster
of initial themes. The same process was completed for
each of the other transcripts in turn. Finally, the
superordinate themes from all eight transcripts were
collated and reduced to a final list of superordinate
themes that represented the key issues to emerge from
across the interviews.
Analysis in IPA is an iterative process that involves
repeated immersion in the text to confirm that the
732 R. Hamill et al.
emergent themes and interpretations are supported
by the data [35,36]. Also, the analysis process is not a
discrete stage of the research, but rather continues
throughout, and new themes commonly emerge even
during the write-up phase [27].
Reliability and validation
Though manifested differently, measures to ensure
validity and reliability are as significant in qualitative
as in quantitative research [26]. In this study, 25% of
the anonymised transcript data were independently
analysed by two other members of the research team
in order to validate the reliability of the lead
researchers analysis and interpretations. Similarly,
during the write-up phase, the co-analysts and three
of the participants were consulted about the emer-
ging superordinate themes. Both the co-analysts and
the consulted participants confirmed that the inter-
pretations were appropriate in terms of internal
coherence, credibility, resonance and significance
[23]. Finally, in this article, sufficient data are
presented in terms of participant information and
original transcript material to allow the reader to
assess the validity of interpretations against the
participants own accounts [37].
Results
Three super-ordinate themes emerged from the
analysis. These were (1) the decision-making process
and control, (2) renegotiation of self-identity and the
struggle to accept a new disabled identity and (3)
adjustment as a social process. Each is described in
detail below.
The decision-making process and control
The first question in the interview schedule Could
you describe how you came to lose a limb? was
designed to access information about the aetiology
and timeline of amputation. Although this type of
data was provided by the participants, the majority of
the respondents focused more on the process they
went through when deciding whether to opt for
amputation. For many, this process involved a cost
benefits analysis in which the potential losses of
amputation were weighed against the risks associated
with not opting for limb removal.
[Roy] Making the final decision was the hardest thing to
do. You know, if I take it off now then its off, you cant
go back and stick it on, its gone. There was a couple of
months I didnt have much sleep. Maybe one week, I
am going to get it off, then the next week, No, Ill not.
Im going to keep it, keep the stiff leg. So then I just
weighed up everything. I put it all down on paper and
weighed it all up and decided I would get it off and that
was it.
In the following extract, though it is not clear
whether the use of the word cut is more Freudian
slip than conscious irony, Bob describes how fear of
creeping infection and higher re-amputation was a
common motivation for the decision to amputate.
[Bob] I decided that I needed to get the leg off cause it
was getting far worse and gangrene had set in in one of
the toes. So it was just a matter of time before one toe
came off and then another one, half the foot and then the
foot and then part of the leg. So I decided to cut the
middle man out and get it taken off.
Other factors that were weighed against the
potential losses of amputation were the reduced
mobility and high levels of activity restriction that
some participants experienced pre-amputation as a
result of underlying conditions. However, pre-
amputation pain was typically identified as the
ultimate deciding factor in favour of amputation.
[Tom] The pain . . . that decides a lot of things. Like
having a bad tooth, its the pain that makes you go to the
dentist, not that youre compromised or that you cant
eat something. Its the pain that drives you to the dentist,
nothing else.
Although pre-amputation pain was identified by
many participants as a key influence in the decision-
making process, for at least one, it was perceived to
completely preclude any opportunity for rational
judgement.
[Clare] At that stage the pain was so great I wouldve
agreed to anything. I was totally out of it because the
pain was so great. I wouldnt say I was in my proper
senses if you know what I mean. I just didnt care what
they done as long as somebody relieved this pain.
Clare felt that, despite having signed a consent
form, she was not in a position to give truly informed
consent because her judgement was clouded by pain
and she did not remember being told of the risks
associated with the surgical procedure.
[Clare] Now, I signed for the bypass, dont get me
wrong, but as I say I dont remember anybody ever
saying to me that one of the complications could be that
you would lose your leg. So I feel that I was nearly
railroaded into it. Probably I took it as an escape. If I
have this done then a couple of days later Ill be home.

So I dont know if somebody had have mentioned
that to me would I have even considered it? . . . I dont
think so.
[Interviewer] When youre talking about things in
those terms, what are the feelings associated with that?
[Clare] I suppose you could be very bitter about it.
[Interviewer] You could be? Are you?
[Clare] Yes . . . though I try to justify it. But is it a
situation like a death that you go through a period of
mourning for your leg? Do you go through this pity me
and the hate stage? I dont know. I just feel that my
independence and my life have more or less been taken
away from me in one sense because I cant do the things
that I normally would have done.
In the above passage Clare appears to make an
attempt to rationalise her anger as a normal, and
therefore transitory, stage in the grieving process.
However, the final sentence reveals her true belief
that the bitterness she feels will be as permanent as
the losses she has experienced. She feels that her
long-term interests have been betrayed by others in
favour of a short-term goal of pain relief. Thus, the
trust relationship she previously had with clinicians is
damaged, as demonstrated by her resistance to a
doctors proposal for further surgery to investigate
the cause of her RLP.
[Clare] She [the doctor] thought maybe there was a
nerve that had recoiled back so they were about
exploring it. But I dont want any more surgery unless
its an absolute necessity. Ive had a bad experience
where you walk in and come out like this.
Thus, in a reverse of her previous position, Clare
chooses to live with significant pain rather than opt
for the risk of further limb loss that she now
associates with surgery.
The significance of perceived control over the
decision-making process was not unique to Clare,
but rather emerged as a strong theme across various
participants accounts. This is clearly illustrated by
comparing Bobs reaction to two different amputa-
tion procedures. For the first amputation (a below
knee removal), Bob acknowledged personal respon-
sibility by noting the role that smoking had played in
precipitating the need to amputate. He then de-
scribed the process of opting for surgery almost
exclusively in terms of active I decided statements
(in stark contrast to Clares almost exclusive use of
they statements). Finally, Bob was able to conclude
of his decision, It was hard, but it felt the right thing
to do. However, for the subsequent (above knee)
re-amputation, Bob provides an account in which he
Psychosocial adjustment following amputation 733
is almost entirely passive in terms of both amputation
cause and decision.
[Bob] Someone had removed the shower-chair out of
the room and had brought it back in and never replaced
the brakes on it and never put the brakes on. While
transferring over I slipped and got a tiny knick right on
the scar where the leg had been re-stitched after the
amputation. District nurses were picking at it and they
never let it heal properly. Then I came in here for a limb
fitting below the knee and picked up MRSA which went
straight into an open wound and from there on it went
downhill. I went over to see the consultant. I cant have
been in the room more than five minutes and I was told
thats coming off basically thats the way it was put to
me we have to take that off.
Unsurprisingly, Bobs reaction to the second
amputation was very different to the first: thats
when I got depressed, really really depressed over it
For many participants, however, decision-making
was a collaborative process in which responsibility
was shared with close family members or, as in Jims
case, health professionals.
[Jim] See to keep my leg the way it was, I had a lot of
pain with that and the wound was oozing out everyday
and it had to be dressed everyday and there came a bad
smell from it. It wasnt pleasant. So it was either, wed
stay with that and maybe let the infection go up the leg,
or moving on and get the leg off. So me and the doctors
finally decided the best course of action was to get my
leg amputated.
For Sue, retaining control over the timing of
decision-making was important even when it in-
curred a considerable health cost. When asked why
she had delayed seeking medical help for a chronic
foot infection, even though it resulted in her needing
a higher level amputation than might otherwise have
been the case, she replied,
[Sue] I think in all honesty, although it had drastic
effects, I still think I did the best for me personally
because I needed to come to the point that I had no
choice, I had to go to hospital. I think if people had have
pushed me and pulled me down to the hospital
screaming and shouting, I think it maybe would have
been a worse experience for me for I would have been
blaming everybody else then you see. But by the time I
did it I knew I had to do it, Id left it that I could not go
on any longer. So I think for me I did it at the right time.
Control over timing was also significant for Pam,
but in her case she used an assertive strategy to
ensure that surgery occurred as soon as possible after
what she felt was an unacceptable delay following her
decision to opt for amputation.
734 R. Hamill et al.
[Pam] I suppose looking back on it and knowing the
[UK National Health Service] systems I should have
been a lot more patient. But it was some girls here [in
the rehabilitation hospital] actually got it in the ear one
Friday and then I went on to the Complaints Officer
[. . .] and then, it was funny, I got an appointment the
next Wednesday [laughs].
The adjustment significance of perceived control
over decision-making is hardly surprising given how
many of the participants recognised that adaptation
ideally begins long before a limb is physically
removed.
[Clare] One of the times I was in [hospital] there was a
man who he was waiting for an amputation and he
talked about it. I think maybe he had more time to adjust
whereas I had to do all mine afterwards.
For those participants who felt they did have an
opportunity to consider their options before surgery,
an important way in which they attempted to assert
control over the decision-making process was by
seeking information about what life might be like
after amputation. The most credible sources for this
sort of information were people who had already
experienced amputation. However, such people were
not always easy to access.
[Tom] I said [to the health professionals], Can I talk to
somebody who has already had an amputation in the
previous year or whatever, and they couldnt help me.
We dont know anybody was the answer I got, which
seemed a bit strange. Now, it could have been the Data
Protection Act, I dont know. I also rang Diabetic UK and
Im still waiting on them phoning me back. I asked them
could they recommend somebody that had an amputation
that I could talk to to see all the ins and outs of it from the
persons point-of-view. Waste of time there, total waste of
time with them. It finished up through a third party, this
friend of mine recommended a chap that had got a leg
amputated on a motorbike accident. I rang him and he
said, Certainly, no problem, come up and see me.
Once an appropriate source was located, that
person was in a position to both inform and validate
the decision made by the participants, thereby
instilling hope for the future following amputation.
[Jim] I had a cousin that lost his leg about three years
before I had my accident. So talking to people [without
amputation] about it, they didnt really understand what
you were going through because they couldnt. So I went
round and I talked to my cousin about it and he showed
me his leg and told me what all he went through, and I
asked his advice. And he advised me, If I had to do it all
again I wouldnt have to think twice. So talking it over
with him, it helped because it confirmed what I was
thinking that I was making the right choice. I asked him
what he was fit to do after the amputation and what he
wasnt. So I knew. Yes, I was going to lose my leg, there
was things I wouldnt be fit to do. But I knew it wasnt
going to be the end of my life. I knew Id get my limb on
and Id still be fit to do most things.
Health professionals were also in a position to
provide credible advice and support, provided that
they were appropriately experienced and, even more
importantly, that their interactions with patients were
personal rather than merely functional.
[Bob] With it being a rehab ward and dealing with
amputees day in, day out, the staff here do know more of
what people is going through. Because theyve experi-
enced it themselves with different people and theyre more
understanding, theyve more time for you, they would sit
down and talk to you and get you to talk about it.
Ultimately, however, the strongest support con-
nection was made with other individuals who had
undergone the same experience.
[Bob] There was a guy in here with me, and me and him
got on really well, and me and him could talk about it.
And youd talk about your fears . . . you know, things
that you think are stupid to ask the nurse about, but
saying to another patient whod go, Yeah, Ive
experienced that. You know Ive felt that.
Renegotiation of self-identity/resistance to new disabled-
identity
Loss of independence subsequent to amputation was
another key theme to emerge from the participants
accounts. The struggle to adjust to this loss was often
manifested in a resistance to accepting a new
disabled-identity. Jim was typical in his view that it
was not the amputation per se that conferred this new
identity, but rather the manner in which others
behaved towards him.
[Jim] From when I had the accident I didnt like people
fussing around me. It made me feel as if I was disabled. I
dont like classing myself, putting the label on me as
disabled, but people fussing around me, trying to do
things for me, trying to encourage me to do things made
me feel more as if I was disabled.
Dave had a very similar experience with his family,
and it was only by taking direct action that he was
finally able to communicate his need to reassert his
independence as much as possible.
[Dave] Sometimes its a bit annoying cause theyre
always wanting to do things for me. But I have to get at it

and do it myself. Like buttering bread or toast in the
mornings. You know, I can do it now myself. Before
they wouldve wanted to do it for me and I wanted to do
it but they wouldnt let me. You know, Sit you down,
relax and things like that. So I just told them to leave it
alone and Id do it myself. At one stage, when they were
finished I went up and I made my own so that sort of
killed that then. So I do everything now myself.
For Clare, the well-intentioned behaviour of her
family had a suffocating effect in which she felt
diminished in terms of her mental competence as
well as activity function.
[Clare] When I came out of hospital the family and my
husband and daughter were. . .very suffocating is the
word I would use. I mean, put locks on the doors and
put locks on the windows in case anybody would come
in and mug me when I was there on my own. Ive lost a
leg, I havent lost my mind! I always did the shopping,
now he has to take me shopping or he goes on his own.
Theres always somebody behind. You go to reach for
something and the hand comes up and reaches it down.
Im ungrateful, theyre very good, dont get me wrong,
and they do mean well. Some women like that. I dont. I
feel smothered. You lost the leg but you need them to
believe that youre still the same person minus the leg.
There were a number of different markers of what
it meant to be disabled. For Tom, it was demon-
strated in his refusal to move to a bungalow, which
he associated with old-age and disability, and in his
indignation at having to re-take a driving test despite
being a life-long car enthusiast. For Sue, it was
revealed in the way she consigned her wheelchair to
redundancy in the garage immediately upon the
departure of the occupational therapist that had just
brought it. However, not all markers were equally
loaded for each participant. For instance, despite
having so explicitly rejected the label of disability (see
above), Jim embraced the concept of wheelchair-use
to such an extent that he was willing to over-ride the
wishes of his son and health professionals to get one.
[Jim] Theres times yes, my youngest boy doesnt like
me using the wheelchair, but to me its a great help. At
the start I had to try and convince the occupational
therapist in the hospital that I needed the wheelchair. I
think they thought because I was a young fella that I
wouldnt need it. But beforehand I was talking to my
cousin [who had an amputation some years before Jim]
and he told me that he still needed his wheelchair at
night, and he said to me, You insist that you get it
because you will need it. I finally got them convinced
that I did, and now looking back Im glad I did because I
do need it.
Self-instigated goal-setting emerged as the most
significant strategy participants adopted in their
Psychosocial adjustment following amputation 735
attempts to reassert independence in their lives
subsequent to amputation.
[Sue] I had great big long lists when I got out of hospital
of things I could not do and I got great joy ticking them
all off as they became doable. The list is very very short
now, very short.
For some, their newly acquired disabled identity
was perceived as a threat to their gender identity. For
example, when asked how amputation had affected
her self-image, Pam responded by immediately
asserting her femininity using the collective term
we in what may have been an attempt to claim
membership of a female group identity as a qualifier
to her newly acquired, asexual, disabled group
identity.
[Pam] We wore a skirt all the time because you dont
see . . . you see a lack of leg in trousers more than you do
in a skirt [laughs]. Thats a female thing. Thats an
advantage we have.
Similarly, for some of the men, changes in self-
image and function were linked with concerns about
their ability to fulfil certain male gender roles. For
Roy, this was manifested in worries about loss of
earning potential being equivalent to diminished
masculinity.
[Roy] You think youre less of a man. You cant provide
the same, youre not bringing in a wage now. Youre not
the earner, the provider, youre depending on benefits
and stuff which I suppose is a big thing too.
Bob recognised that powerful media stereotypes
helped shape his concerns regarding the impact of a
perceived loss of masculinity on his attractiveness to
his partner.
[Bob] It just didnt feel as if you were a full man
again . . . Maybe Hollywood has something to do with it.
You know when you see films that the wife has walked
out on the husband and all that there because of
disability and whatever.
In an extension of this theme of diminished
personhood, Bob used a powerful metaphor to
communicate how he felt some nursing staff related
to him as an object, rather than a person: to them
youre just a lump of meat. For him, this compar-
ison was maladaptive as it represented a form of
depersonalisation and loss of dignity that was
reinforced by his experience of maggots being placed
on his stump to clear away dead tissue but then going
on to consume living tissue, literally eating away at
his personhood.
736 R. Hamill et al.
Dave used an implied meat metaphor to represent
a process of disembodiment at the point of losing his
lower arm in a work accident. However, in his case
the representative process was highly adaptive.
[Dave] The other boy, I told him to go and get something
to tie my arm off. He came back with a bit of dirty rope. So
I chased him away with that, I said, Go and get me
something finer and cleaner. So I tied it off and waited
until the blood stopped, and then after, I went down to the
hospital. I had a clear head. I used to work in a meat factory
so I was used to the blood and stuff.
Thus, by severing his arm psychologically as it was
severed physically, he was able to retain an objectivity
(notably lacking in his work colleague) that ulti-
mately ensured the survival of the rest of his person.
Adjustment as a social process
The role of social factors as mediators of adjustment
was another key theme to emerge from the partici-
pants accounts. For instance, the negative impact of
being socially isolated immediately after surgery was
expressed by Bob.
[Bob] Having no one to talk to, being down at the very
end of the ward. All youd hear was the doors opening
and people going into the next ward. And thats all. You
never heard anybody talking.
[Interviewer] And how did that affect you?
[Bob] Suicidal. Really suicidal . . . I had my insulin pens
in the room. Id maybe three insulin pens. Feeling as if
you could load them pens up and just jack yourself and
nobody would have knew. And nobody would have
come near you.
Bob was well aware of the irony in responding to
this social isolation by increasing the very behaviour,
smoking, that had precipitated his amputation.
[Bob] I got up every morning about half six and went
down to the smoke room and sat there till about quarter
to eight just to get company. And by doing that you were
smoking your brains out the whole day. Instead of
maybe smoking maybe eight cigarettes a day you were
smoking thirty which wasnt doing you any good. But
just for company. Just to have someone to talk to.
For Roy, it was the implications of being socially
integrated that persuaded him to get rid of his
firearms after making an attempt to take his own life
during a depressive episode soon after amputation.
[Roy] I got that bad I had to get rid of my guns out of
the house, I got them away. I tried to use the gun one
night and she just didnt work. So that sort of clicked
that Id need to catch myself on. You start to think of the
ones youre going to leave behind. Like my daughter,
she wasnt too old then, around ten I think.
A double meaning of the words clicked and
catch is evident in Roys narrative. According to
this interpretation, it was the click of the trigger
failing to fire the gun that prompted him to rethink
his suicidal intent, and it was an awareness of the
impact of such behaviour on significant others that
acted as a safety catch against his attempting suicide
again in the future.
During the initial rehabilitation phase, many
participants derived comfort and motivation from
comparing themselves to other individuals with
amputation. This occurred in a number of different
ways. For example, Sue was encouraged by the
example of other people in the physiotherapy gym
who were ahead of her in the rehabilitation process.
[Sue] Everybody wasnt on my Day-One. So I went in
there as a Day-One person and there was somebody was
in there a week, a fortnight, six weeks, whatever. And
you could instantly see people ahead of you what they
were doing. And people that were older than you doing
things and Im saying, Well, hes seventy-eight years of
age and if he can do that, I can do that! You know, what
excuse could I possibly think of not being able to do it?
Another very common form of comparison with
others involved comparing the impact of disability so
that the participants own problems were reappraised
as less serious. Sue described this process when she
talked of a 16-year-old boy who was undertaking
physiotherapy at the same time as her.
[Sue] I felt so sorry for him then Id not time to feel
sorry for myself. At least Im past working age, Ive done
things, you know. Im not missing out whereas hes
missing out on nearly everything because hed a full
amputation and something with the other leg. So that
kind of took any self-pity I might have been going to
achieve right out of the picture.
A more abstract process of comparison also
occurred in which some participants compared their
current situation favourably to the circumstances of
individuals who had experienced amputation in years
past.
[Roy] I dont know how they done years ago when they
had nothing, had to make their own pegs.
For many participants, social support was more
significant than practical support, as demonstrated
by Clares account of her telephone conversation

with a social worker soon after returning home from
the hospital.
[Clare] The social worker rang me and asked me did I
need her and I said I would need help around the house.
Oh, your husband works, youll have to pay and thatll
be 7 an hour. I said, Right. And she said, Is there
anything else? And I said, I cant think of anything.
And she said, Oh, well then theres no need for me to
come out. But if shed even have come out and sat and
talked to me as a one-to-one. I think this [research
interview] is really the first time Ive had a conversation
with anyone to actually talk about the leg on a one-to-
one basis.
The terms on which social contact was provided
were crucial. As Clare describes, in many family and
social situations she felt under pressure to minimise
or deny her adjustment problems in order to avoid
evoking negative feelings in others and potentially
jeopardising the prospect of future social contact.
[Clare] I felt that once you came out of hospital you
were on your own. There was nobody to talk to, and
when you did go out you tried to talk about everything
other because you feel youre being a whinge. People
dont want to listen to you whinge, Ive no leg, Ive no should attach such significance to this issue. It has
this, Ive no the other. I wouldnt want to listen to
anybody like that. So therefore you try to be, Im great,
Ive only got one leg, it doesnt bother me.
Although the majority of participants reported that
the response they received from others following
their amputation was overwhelmingly positive, the
following extract from Bobs account clearly illus-
trates the serious emotional and behavioural con-
sequences that one negative social interaction can
have. Bob, who has a visible congenital bilateral arm
disability, reported the comment of an acquaintance
upon meeting him for the first time since his
amputation.
[Bob] I got a comment made to me on Boxing Day that,
I was a real spastic bastard now, which didnt go down
too well. I let that get to me, and at one stage I
completely thought about not coming back here [to the
rehabilitation centre] cause I was going like, Whats the
use, you know, if people are going to treat you like that?
For others, concerns about what non-disabled
people were thinking were sufficient to prompt
them to avoid social interaction. In the following
extract, note how Roy acknowledges that, though his
initial fears of being treated as abnormal by others
were not realised, his own remembrance of how he
previously viewed individuals with amputation was
enough to cause him to stigmatise himself now as a
freak.
Psychosocial adjustment following amputation 737
[Roy] I imagine everybody is staring at me, thinking that
youre a freak or something, or that youre not walking
right. I expected people to be worse, to maybe say things
or something like that, but it hasnt been. It was all just a
bit up in my head. Whether I felt that way when I had
two limbs that I probably looked at people in the same
way, and that has been in my head too.
Discussion and conclusions
This study contributes to the process of redressing
the balance between quantitative and qualitative
research in the area of adjustment to amputation
[24]. Unlike previous qualitative research in the area,
this study focuses on adjustment experiences of
individuals in the initial period following amputa-
tion. Perhaps because of the relatively short time gap
between amputation and research interview, the key
theme to emerge in the analysis related to the
adjustment significance of perceptions of control in
the pre-amputation decision-making process. This
theme was not anticipated by the research team, and
emerged despite there being no direct prompt in the
interview schedule. However, in retrospect, it is
hardly surprising that a majority of the participants
been noted that for most individuals the process of
adjustment begins long before surgery, as soon as the
possibility of amputation is first considered [4].
Given the predominant vascular-related aetiology of
amputation in the developed world, most individuals
here have a considerable period of time in which to
weigh up the pros and cons of amputation. As
demonstrated in this study, where two of three
individuals with traumatic aetiology had a gap of
years between trauma and amputation, even a
significant proportion of people who lose limbs as a
result of trauma have an opportunity to go through a
decision-making process before the limb is finally
removed.
Despite the clear importance of this issue for the
current participants, it is notable that previous
research on decision-making and amputation focuses
primarily on the decision-making of health profes-
sionals rather than patients [3840]. Given that the
association between higher levels of perceived con-
trol and improved adjustment is widely acknowl-
edged in health psychology [41], this represents a
significant gap in the literature. In this study, the
accounts provided by Clare and Bob suggest how
negatively adaptation can be impacted when an
individual perceives a lack of decisional control prior
to amputation. Perceptions of informational control
[40] were also identified as important, although there
was a clear hierarchy of credibility in terms of who
provided the information. The most privileged
sources were other individuals with amputation
738 R. Hamill et al.
who were afforded insider status [5] by dint of their
personal experience of limb loss. However, health
professionals could also be awarded a form of insider
status that derived as much from their manner of
relating to participants as from their credentials and
technical expertise.
According to Terror Management Theory [42],
adjustment is a process in which an individual
attempts to protect their self-esteem by asserting
their value as a person in a meaningful context. For
many of the participants in the current study, this
process was manifested in a resistance to accept a
new disabled identity, and a struggle to adapt to a
loss of independence and functioning with regards to
activities of daily living (ADL). The specific markers
of this disabled status were highly idiosyncratic.
Thus, for example, Sue could perceive her wheel-
chair as disabling while Jim perceived his as enabling.
Many of the participants successfully adopted a
self-instigated strategy of goal-setting as a means to
gradually reassert their sense of self-efficacy. A
process of reality negotiation [43] was also com-
monly employed to transform contingencies of
self-worth [44] in a manner that was protective of
self-esteem. However, all of the participants ac-
knowledged that their attempts to adapt to the
sequelae of amputation were significantly mediated
by factors in their social context.
One positive consequence of experiencing adjust-
ment in a social context was that it allowed participants
the opportunity to compare their situation with other
individuals with amputation in a way that either
motivated them in their rehabilitation efforts (upward
social comparison) or helped them to reappraise the
severity of their own situation in a way that enhanced
their self-esteem (downward and temporal social
comparison) [45]. Less adaptive was a recurring social
process in which participants were de-individuated
[21] and stigmatised by other, non-disabled indivi-
duals. Sometimes this was a conscious process, as in
the malicious comment from Bobs acquaintance in
the street. More often, though, it was a non-conscious
process in which the well-intentioned efforts of others
had the effect of classifying the individual with
amputation solely in terms of their disability as
dependent, incompetent and vulnerable. In effect,
the person got lost behind the label.
Rybarczyk et al. [3] argue that, in a process of self-
stigmatization, individuals with amputation often
internalise aspects of social stigma relating to feelings
of shame and embarrassment about their perceived
abnormality. Such a process was clearly evidenced
in many of the current participants accounts.
Ironically, for Roy this process was driven more by
a projection of his pre-amputation self than by
stigmatisation from a non-disabled other. For Clare,
self-stigmatisation led her to choose emotional
isolation rather than risk social isolation from her
family and friends. As a result, even though she felt
that her familys constant physical presence was
suffocating, she felt unable to connect with others to
help her cope with the emotional sequelae of her loss.
Clares account is a clear demonstration of the
finding that it is the quality of relationships, rather
than the extent or structure of social networks that
ultimately mediates psychosocial adjustment [19].
The primary aim of this study was to give voice to
the experiences of eight individuals who are in the
early stages of adjusting to life with amputation. The
picture that emerged from their accounts was one in
which attempts to assert control over decision-
making and protect self-esteem occurred in a social
context that, at different times, both promoted and
hindered adjustment. A secondary aim widely
endorsed by the participants themselves relates to
the role this study may play in informing future
research and clinical practice.
In terms of future research, the findings of this
study suggest that more qualitative and quantitative
research is required to investigate the process of
patients pre-amputation decision-making, and the
impact that perceptions of decisional and informa-
tional control may have on their subsequent adjust-
ment. With regards to implications for clinical
practice, the difficulties some participants reported
in officially accessing individuals who had previous
experience of amputation suggests that a database
should be established of people currently utilising
rehabilitation and prosthetic services who would be
willing to discuss their experiences with others in the
future. Finally, the important adjustment role played
by key members of participants social networks
suggests that the family members of individuals with
amputation should be provided with more education
regarding various relevant topics such as the differ-
ence between support behaviours (perceived as
helpful by the person providing the support) and
support appraisals (perceived as helpful by the
person receiving the support) [6].
To conclude, this study aimed to give voice to the
experiences of adjustment of eight participants who
had experienced amputation within the previous 18
months. Key themes to emerge from the research
related to, (1) the pre-amputation decision-making
process and control, (2) renegotiation of self-identity
and the struggle to accept a new disabled identity and
(3) adjustment as a social process. It is acknowledged
that the validity of this study may be limited by the fact
that only three of the eight participants were involved
in the analysis triangulation process at the write-up
stage. However, this research furthers understanding
of the pre-acute, acute and post-acute adjustment
process from the insider-perspective of individuals
who have experienced amputation in a manner that

provides specific suggestions for further research and
clinical practice.
Acknowledgements
The authors wish to thank Mr. Roger Parke, Dr.
Colin Wilson, Dr. Martin Dempster and Dr. Jennifer
Shepherd for their advice and support during this
research process.
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