Journal of Hand Therapy xxx (2019) 1e7

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Journal of Hand Therapy

journal homepage: www.jhandtherapy.org

Social participation in persons with upper limb amputation

receiving an esthetic prosthesis
Freyja Kristjansdottir OT BSc a, *, Lars B. Dahlin MD a, b, Hans-Eric Rosberg MD, PhD a, b,
Ingela K. Carlsson OT PhD a, b
a
Department of Hand Surgery, Skåne University Hospital, Malmö, Sweden
b
Department of Translational Medicine e Hand Surgery, Lund University, Malmö, Sweden

a r t i c l e i n f o a b s t r a c t

Article history: Study Design: Qualitative study.

Received 14 March 2018 Introduction: An amputation injury to the hand may lead to not only impaired hand function but also
Received in revised form psychosocial consequences.
18 March 2019
Purpose of the Study: The purpose of the study was to explore personal experiences of social participation
Accepted 20 March 2019
Available online xxx
for persons provided with an esthetic prosthesis after acquired upper limb amputation.
Methods: Thirteen persons with acquired upper limb amputation, who were in need of and had received
an esthetic prosthesis, were interviewed. The transcribed text was subjected to content analysis.
Keywords:
Participation
Results: The emotional reactions to a visibly different hand were linked to a changed appearance and a
Visible difference feeling of being exposed. Recollecting the accident could result in nightmares and sleeping disorders. A
Upper limb amputation change of personality, due to sadness after the amputation was expressed, as well as social insecurity and
Adaptation impact on relations and life roles. Adapting to social challenges comprised hiding or exposing the hand,
Prosthesis using personal internal resources and receiving support from others. The esthetic prosthesis contributed
Social participation to an intact appearance and could serve as a facilitator for initial or long-term social participation. The
time that had passed since the injury made it easier to deal with the consequences or in achieving
acceptance.
Discussion: Coping with emotions and social relations after an acquired amputation can be difficult and
complex.
Conclusions: Individual needs must be considered and questions about appearance and how it may affect
social participation must be asked. An esthetic prosthesis can normalize the appearance and offer the
confidence needed to facilitate social participation in those struggling with appearance-related concerns.
Ó 2019 Hanley & Belfus, an imprint of Elsevier Inc. All rights reserved.

Introduction the disfigurement.6 Adjusting to an acquired amputation, or other

Yearly in Sweden, approximately 4 persons per 100,000 in-
habitants suffer an upper limb amputation.1 Devastation and
distress have been described as initial reactions after an upper limb
amputation.2 Significantly higher levels of anxiety and depression
compared to a general population as well as esthetic concerns have
also been reported.2-5 The psychological impact of a visible disfig-
urement, or visible difference, may depend more on the self-
perceived appearance than on an objectively assessed extent of
This study was supported by grants from the Healthcare Academy at Skane Uni-
versity Hospital.
* Corresponding author. Department of Hand Surgery, Skåne University Hospital,
Malmö, Sweden Jan Waldenströms gata 5, S-205 02 Malmö, Sweden. Tel.: þ46 40
33 26 89; fax: þ46 40 33 70 65.
E-mail address: freyja.kristjansdottir@skane.se (F. Kristjansdottir).
visible differences, is a complex process involving individual vari-
ations.7-10 The challenges the patients face includes not only im-
pairments in body function and activity limitations but also
participation restrictions.3,11,12 The International Classification of
Functioning, Disability and Health defines participation as a per-
son’s involvement in life situations.13 Participation includes societal
involvement, but a clear definition of the concept is lacking,
particularly the distinction between activity and participation.14,15
The additional concept “social participation” has been suggested
as being a more appropriate term to emphasize both the societal
involvement and the subjective experience of participation.15
Prostheses in general facilitate a person’s activity, well-being,
and social interaction.3,5,11,16 An esthetic prostheses, with its life-
like appearance, provide the wearer with the opportunity to look
outwardly intact. That, in turn, can facilitate adjustment by mini-
mizing both the difference between the current and former

0894-1130/$ e see front matter Ó 2019 Hanley & Belfus, an imprint of Elsevier Inc. All rights reserved.
https://doi.org/10.1016/j.jht.2019.03.010
2 F. Kristjansdottir et al. / Journal of Hand Therapy xxx (2019) 1e7

appearances and the sense of being different from others.5 Patients dream job, but is now working in a different field. The Modified
with upper limb amputations, who desired and were in need of Hand Injury Severity Score, with its 4 levels ranging from minor to
esthetic prostheses due to appearance-related concerns, have been major, was used to classify the severity of the injuries.18,19 Table 1
provided with such an aid since the late 1990s at our clinic. Vari- shows the characteristics of the participants.
ations in how frequent, for how long, and in which situations the
prostheses is used may, however, occur. In what way social
participation is affected for those provided with an esthetic pros- Procedure and ethics
thesis is sparsely described previously. A deepened knowledge
about experiences arising in social situations and the influence an The interview guide was drawn up by the first author and fourth
esthetic prosthesis may have are, therefore, of interest to further author (F.K. and I.K.C.) based on earlier literature on participation
develop therapeutic approaches in accordance with patients’ in- and was also discussed with experienced occupational therapists
dividual needs. and physiotherapists working with hand rehabilitation.13,15,20-22
The interviews started with the participant being introduced to
Purpose of the study the aim of the study, confidentiality was guaranteed, and the
meaning of the social participation concept was explained. To
The aim of the present study was to explore personal experi- reveal the area of social participation, the participants were asked
ences of social participation for persons provided with an esthetic to describe important social situations and the impact the ampu-
prosthesis after acquired upper limb amputation. tation may have had. Furthermore, questions concerning how the
participants dealt with social challenges and the possible influence
Methods of the esthetic prosthesis on social participation were raised.
Follow-up questions were asked to deepen the content of the an-
Design and participants swers, for example: Which emotions were evoked? What were
your thoughts? How did you handle that? Initially, a pilot interview
The study design is qualitative with an inductive approach to was carried out, which was later included in the study. The pilot
capture the participants’ own experiences of how the prosthesis interview did not generate any changes in the interview guide.
has influenced their social participation.17 The inclusion criteria First, 10 participants were contacted by telephone to arrange a
were persons with acquired upper limb amputations and who, for time and place for the interview. As new information was revealed
various reasons, were in need of and had received their first during the last 3 of these 10 interviews, an additional 3 people were
esthetic prostheses within a reasonable time span, estimated to be contacted and interviewed. These interviews added no new infor-
one to 5 years before the interview. The time span was set on the mation indicating that data saturation had been reached.23
basis that the person should be able to remember what it was like The interviews were carried out by the first author (F.K.) over a
before they received the esthetic prosthesis and could, therefore, 10-month period and were held at a place of the participant’s choice,
share their experiences both with and without the prosthesis. The mostly in a quiet room at the clinic. One interview was conducted by
exclusion criteria were the presence of mental, cognitive, linguistic telephone due to long distance. The interviews were audio-recorded
impairment or any other disorders that could overshadow the and transcribed verbatim by the first author (F.K.) after the
experience of the phenomena in focus or the ability to participate in completion of each interview. Nonverbal expressions were noted.
an interview. Fifty-one people received their first esthetic pros- The interviews lasted between 17 and 74 min (median 40 min).
thesis from the Hand Surgery Department, Skane University Hos- Before the interview, the participants completed the acute
pital, in the years 2012 to 2015 and were thus eligible for inclusion. version of the Short Form 36 (SF-36) questionnaire to provide
Fifteen were excluded: 6 had insufficient knowledge of the Swedish further information about their health status. SF-36 is a self-
language, 4 suffered from a current psychiatric disorder, 3 had reported questionnaire comprising aspects of physical and
congenital absence, and 2 could not be reached due to the lack of emotional roles as well as social functioning.24 (Table 2) Funda-
contact details, leaving 36 potential participants, who were cate- mental ethical considerations, based on the Helsinki Declaration,
gorized by age, gender, and level of amputation to create a pur- were taken into account, and approval of the study was obtained
posive sample. In total, 18 were selected, representing the different from the local ethics committee, Lund University, Sweden (Dnr
categories mentioned previously. A letter with information about 2016/550).
the purpose and voluntary nature of the study, and with an invi-
tation for their participation, was sent continuously as the study
proceeded. Two refused to participate through lack of interest, 2 Table 1
stated that their working conditions were an obstacle, and one Characteristics of the participants
thought it was too upsetting to talk about the amputation, leaving a Participant Age Gender MHISS score Current prosthesis usage:
total of 13 persons who ended up taking part in the study. daily/occasionally/never
The group had a median age of 52 years (range 23-74 years) and 1 51-60 M Major Occasionally
had suffered a variety of amputations from partial finger or thumb 2 71-80 M Major Occasionally
amputation to total amputation of all fingers. All were married or 3 61-70 M Major Occasionally
4 21-30 M Major Occasionally
lived with a partner. Six had injured their dominant hand, 5 the 5 71-80 F Moderate Occasionally
nondominant hand, and 2 had bilateral injuries. The median time 6 61-70 F Moderatea Occasionally
since the amputation was 3 years (range 2-7 years), and the median 7 21-30 F Severe Occasionally
time since receiving the first esthetic prosthesis was 3 years (range 8 31-40 F Major Daily
9 21-30 F Major Daily
1-5 years). The participants represented different occupational
10 41-50 M Severe Occasionally
fields: student (n ¼ 1), wage earner (n ¼ 9), and retiree (n ¼ 3). The 11 51-60 F Major Occasionally
types of work were light office work, lighter manual work, and 12 51-60 F Major Never
heavy manual work. All but one of those working returned to their 13 21-30 M Moderate Never
jobs after the amputation injury; the one who did not was forced to MHISS ¼ Modified Hand Injury Severity Score.
a
change professional plans because of the amputation, giving up a Amputation cause: disease. Estimated MHISS score.
 F. Kristjansdottir et al. / Journal of Hand Therapy xxx (2019) 1e7 3

Table 2
Health-related quality of life (SF-36) in persons with an amputation to the hand (n ¼ 13) and in a general Swedish population (n ¼ 8930)

SF-36 scalea Participants, median (range) Participants, mean (25%-75%) General Swedish population, mean (25%-75%)
Physical functioning (PF) 85 (50-100) 83 [75-90] 88 [85-100]
Role physical (RP)b 100 (0-100) 75 [75-100] 83 [75-100]
Bodily pain (BP) 70 (43-100) 74 [57,5-90] 75 [52-100]
General health (GH) 80 (15-100) 72 [62,5-95] 76 [62,5-92]
Vitality (VT) 63 (25-100) 65 [45-90] 69 [55-85]
Social functioning (SF) 75 (13-100) 75 [50-100] 89 [87,5-100]
Role emotional (RE)b 67 (33,5-100) 69 [33,5-100] 86 [100-100]
Mental health (MH) 78 (28-100) 73 [56-92] 81 [72-96]

SF-36 ¼ Short Form 36.

a
Higher score indicates better health state.
b
Subscales measuring participation.25

Analyses Appearance-related concerns

The text was analyzed using conventional content analysis.26,27
The first author and fourth author (F.K. and I.K.C.) read and reread
the transcripts independently to obtain an overall understanding of
the content. The next step was to find meaning units by identifying
words or sentences related to the aim of the study. The meaning
units were then coded, carefully retaining their meaning. The
codes, in turn, were compared and discussed, and similarities and
differences were identified, leading to the emergence of sub-
categories. Those subcategories that shared commonalities were
finally abstracted into main categories (Table 3). Each category was
critically analyzed and compared with each other until a reasonable
interpretation was reached. The process so far was performed by
the first author and fourth author (F.K. and I.K.C.). The categories
were thereafter discussed, processed, and adjusted with the help of
the second author (L.B.D.) who read 3 interviews of dissimilar
character and the third author (H.E.R.) who read all 13 interviews,
to ensure that all aspects present in the text were covered. Con-
cerning the authors’ preunderstanding, the first author and fourth
author (F.K. and I.K.C.) are occupational therapists with long
experience of hand therapy, and the second author and third author
(L.B.D. and H.E.R.) are experienced hand surgeons. Some of the
participants had previously been treated by the interviewer, and all
were aware of or were informed of the interviewers’ clinical
experience. All authors are educated or experienced in qualitative
research and work in a specialized unit.
Results
The results are presented as 3 main categories: emotional re-
actions to a visibly different hand, consequences for social inter-
action, and adapting to social challenges (Table 4).
Emotional reactions to a visibly different hand
Dissatisfaction with the appearance and other people’s atten-
tion to the visible difference was emotionally stressful. Memories of
the accident could be painful, sometimes requiring professional
treatment. The visibly different hand was also experienced as
affecting personality.
Feelings of dislike, of being abnormal and ugly, truncated,
alienated, or even feeling disgusted with the hand were emotional
reactions linked to appearance-related concerns. This could result
in only looking at the hand when necessary, for instance, when
cutting the nails. Feeling truncated was emotionally hard and made
it difficult with self-confidence. Alienation toward the changed
hand was also experienced and could be expressed as in the
following: “I think it’s disgusting because I haven’t accepted the hand
yet. So when I see it in the mirror I get such a shock, I don’t get that it is
my hand, I think it is someone else’s.” Ambivalent emotions, such as
thinking it is all right to show the hand but still preferring to put it
in a pocket, existed. At the same time they both wanted and did not
want to tell people about the situation. “You don’t want people to see
the thumb because it’s not my thumb, I still feel that. But at the same
time it is who I am.”
A feeling of exposure
The mental strain of having the hand constantly exposed, or at
risk of being exposed, was experienced in several situations: when
shaking hands, eating, drinking, or standing in front of a group
presenting something. A general feeling that everybody was look-
ing at the hand and worries about how others might react to the
hand raised many questions: What would people think, or say?
Would they associate them only with the amputated hand? Will
they consider it unpleasant or disgusting? Are people going to talk
about them behind their backs? There were feelings of shame
about its appearance when the hand was exposed. Further stress-
related emotions such as nervousness and anguish were experi-
enced when the hand was exposed, or at risk of being exposed. This
could give rise to physical symptoms, such as tingling and a feeling
of heatstroke.
Recollecting the accident
People often asked questions about the injury, which resulted in
memories and flashbacks of the accident. These memories were
also experienced at night, resulting in nightmares and sleeping
disorders that could occur even many years after the amputation.
Some needed psychological support to overcome their difficulties.
Even if they did not need psychological support, feelings of sadness
about what had occurred were engendered when people noticed
and commented on the different appearance of the hand. Just the
fact that they saw the hand all the time could serve as a daily

Table 3
Example of meaning units, codes, subcategories, and categories

Meaning unit Code Subcategory Category

“Lots of people are watching, it’s kind of unpleasant.” Discomfort A feeling of exposure Emotional reactions to a visibly different hand
“With the prosthesis I don’t stand out, nobody is looking at me.” Blend in with others Utilizing esthetic prosthesis Adapting to social challenges
4 F. Kristjansdottir et al. / Journal of Hand Therapy xxx (2019) 1e7
Table 4
Main categories and subcategories
Main categories Subcategories
Emotional reactions to a visibly Appearance-related concerns
different hand A feeling of exposure
Recollecting the accident
A feeling of a changed personality
Consequences for social interaction Social insecurity
Impact on relations
Adapting to social challenges Hiding or exposing the hand
Using personal internal resources
Receiving support from others
Utilizing esthetic prosthesis
Acceptance
reminder. Some got trapped in dwelling on the incident and
blaming themselves for what had happened. One example of
recollection at a later stage, after the esthetic prosthesis had been
received, was that handling the prosthesis, putting it on and taking
it off, led to thoughts of the accident resurfacing. Although the
esthetic prosthesis fulfilled its purpose by improving the appear-
ance of the hand, the mental strain of handling it led to it being
abandoned.
A feeling of a changed personality
Awareness that the amputation had changed their personality
was described. “I think I have changed as a person. I have become
more insecure, I think more because the injury affects my personality
so much.” There was a former leader who had withdrawn after the
accident feeling that the energy was lacking, and a social type who
became a loner, unable to feel the same joy as before and not even
feeling like the same person anymore - “Friends, family and ac-
quaintances they still see you as you, but you don’t see you as yourself
anymore.” Being constantly reminded of the injury in their daily life
evoked emotions such as sadness and bitterness, described as
affecting their personality. A sense of being less worthy because
they were unable to use both hands or carry out ordinary tasks was
described.
Consequences for social interaction
Social participation was restricted by insecurity experienced in
company of others. Friendship, family relations, and intimate sit-
uations with a partner were affected to a varying extent.
Social insecurity
Social insecurity could be experienced in both small and large
groups and was often connected with exposure or the fear of being
exposed. There was a constant worry about whether or not some-
one had discovered the injury together with a fear of being seen as
incomplete. A fear of being belittled by others when the amputa-
tion was discovered was also expressed, that people would see you
as being of less worth. Another example of social insecurity was the
inability of being relaxed among others which could be intensified
by others believing that after a certain time you should have learnt
to live with it. Yet another example was a feeling of being pitied;
that is, that friends invited you or came over for dinner because
they felt sorry for you not because they wanted to see you.
Impact on relations
The amputation could have an impact on relations, thereby
affecting life roles as a friend, parent, or spouse. One response to the
social insecurity described previously was to withdraw or to
decline invitations and stay at home. This withdrawal behavior
could lead to friends finally giving up on them. “After the injury I
have become a lone wolf and I have no friends anymore.” There were,
however, examples of friendships and other relations being
enhanced; for example, a formerly complicated relationship with a
parent matured and deepened after the accident. Some participants
experienced not being invited to events or asked to go out, friends
distancing themselves as if they did not know how to treat them
after the amputation, or as for acquaintances choosing to go down a
different aisle in the grocery store to avoid a meeting. The ampu-
tation also affected the families to varying extents, for instance, the
children were sad and worried or a family member suffered from a
depression because of the injury. Interaction between family
members was also affected, as when a participant found it difficult
to approach a child who needed help with buttons or zippers.
Although the child did not care, such a move meant that the hand,
which was always kept hidden, was exposed making both the vi-
sual difference and the impaired function apparent. Fear of
touching a partner with the amputated hand, believing the partner
thought it was ugly, was presented. The participants did not believe
their partners when they stressed that they had no such thoughts.
Although the partner did not care, there was a feeling of being
unattractive and not feminine or sexy. Others described an inability
to feel relaxed in intimate situations; “You don’t feel as relaxed
because you feel that you are always . (pause) He doesn’t think about
it but I do, and it affects how you are a lot. So I have become more
careful and it doesn’t feel as natural.”
Adapting to social challenges
Different adaptation strategies to overcome challenges in social
interaction were described. Support from others was appreciated
both from an emotional and practical aspect. The esthetic pros-
thesis was considered being a part of the adaptation process. The
time that had passed since the injury made it easier to deal with the
consequences or in achieving acceptance.
Hiding or exposing the hand
Strategies used to conceal the hand included hiding it by putting
it in a pocket, hiding it under the other hand, holding the fingers at
a favorable angle, or using various kinds of coverings. The initial
phase, when it was still covered with dressings, was sometimes
experienced as easier since the hand was not exposed. This could
lead to the dressings being used longer than was necessary.
Another strategy was to constantly keep the hand in a fist position
to hide it from oneself and thus avoid upsetting emotions. “I hide
the hand. I hide the hand all the time - from myself.” Although many
years had passed, and participants were used to, and felt
comfortable about, showing the hand, they chose to keep it in their
pocket. In contrast, another approach was exposing the hand and
being open about its condition, sometimes by consciously seeking
attention. It was described as healing to talk about it and it was
even used consciously as a topic of conversation to focus attention
or as a warning example to others. To tell people about the
amputation could also be experienced as easier than waiting for it
to be discovered. Instead of the distress of not knowing what other
people were thinking when they saw the amputated hand, they
chose to tell them about it and how it had happened.
Using personal internal resources
Various personal resources were identified, which influenced
the approach the participants used and their ability to adapt.
Determination not to let the amputation affect their lives, not
allowing themselves to dwell on the situation, and demanding that
others treat them normally were mentioned. An ability to plan
ahead how to solve certain practical tasks directly after the
amputation while still in hospital was also described. Both humor
 F. Kristjansdottir et al. / Journal of Hand Therapy xxx (2019) 1e7
and an underlying optimism influenced their approach. “I play golf,
so I have a double handicap” a participant joked, holding up the
hand that had no fingers. The ability to joke about the situation was
described as healing. Stubbornness could be triggered when others
doubted their capacity to perform certain activities. “People are
saying you can’t do this or that. Well, then instead I become kind of: I
will show them I can.”
Receiving support from others
Old friends turned up and showed their support after hearing
about the accident. Family, friends, and neighbors offered much
appreciated emotional and practical support and provided a safe
environment where one did not have to explain what had
happened because everyone already knew. Although the support
given was appreciated, it could result in a sense of lost indepen-
dence, for instance, in the initial phase when one had to have one’s
food cut up by one’s partner.
Utilizing esthetic prosthesis
The esthetic prosthesis itself can be seen as a part of the adap-
tation process. Among the expectations regarding the prosthesis,
the most common was a wish to improve or normalize one’s
appearance. The prosthesis actually met this expectation by making
the hand appear intact; while worn, it concealed the injury. The
person wearing it looked like everyone else and blended in with
others. As one participant put it: “I would not want to be without it,
I’m really grateful for it. You know that it is there, you are safe. If you
want to be normal you put it on.” Wearing the prosthesis offered a
relief from people staring at the hand and asking questions. This
applied particularly to those who constantly met new people, for
instance, in their jobs. They had experienced people being very
curious, almost forcing them to talk about the injury and the ac-
cident, and wearing the prosthesis allowed them to avoid this. The
normalizing effect also applied not only to their own perception of
the hand but also to that of the people around them. The prosthesis
made them feel as they did before the accident, and they forgot for
a while that they had undergone an amputation. They felt whole
and could even wonder if the amputation had really happened.
The esthetic prosthesis offered social security and enabled social
interaction with others, privately and at work. It could be vital for a
return to work as it provided the power and security needed to be
able to meet people. “It was only when I got the prosthesis that I felt
safe.” Another description was that it made it possible to relax, for
instance, at a party. Even among those who did not use their
prosthesis daily, there were times when they felt extra vulnerable
and when the prosthesis instilled a sense of confidence. The
esthetic prosthesis could be indispensable and crucial in all social
contacts; they needed it even simply to be able to step outside the
door. These participants were still suffering from their loss and
were not able to accept their new appearance and its consequences.
For them it was unthinkable to be without their esthetic prosthesis
in any social situation, or even with their partners. “It’s a wall to me
sometimes, you want to take it off, but you can’t. It’s like the end of the
world. I’m nervous and worried he will realize it is awful.”
Sometimes the prosthesis was used only for a transitory
period, and after a couple of years, it was used much less or not at
all, as the person got used to their new appearance and those
around them no longer paid any attention. “So I was at a party, it
was a company party, and I did not wear . everybody knows .
Nobody looks at me, nobody notices it and everybody knows me
without fingers, well so that is no problem!” Some realized, after
having used the esthetic prosthesis for a while, that they managed
better without it. Having been able to try an artificial limb, and
realizing its limitations, may have helped them to adapt to the
new situation.
5
Although some participants became almost addicted to their
prosthesis, others used theirs as an accessory simply to enhance
their appearance in certain social situations, perhaps not only when
meeting unknown people but also when together with people they
knew well. When going to a party or celebration, with people who
were used to see them without the prosthesis, they nevertheless
put it on to look extra good and to improve their appearance. “I
would have managed without, but at the same time I like to put it on if
I’m going out. It is somehow a part of me.” It was compared to putting
on make-up, spending time choosing the right shoes to suit their
outfit, or putting on an extra necklace or ring. Actually, they could
have gone without the prosthesis, but they chose not to because
they felt nicer with it on. “I think I feel a little, you can call it vanity if
you want, you feel a little more . nice, or what to say. It’s kind of, yes,
like an accessory.” After initially having been worn more frequently
this is how the prosthesis could eventually end up being used.
Acceptance
Achieving acceptance could be linked to the time that had passed
since the injury occurred as it became easier to deal with the conse-
quences over time. The participants and those around them got used
to their new appearance, which was described as helping them to
achieve acceptance. However, there could also be a kind of determi-
nation in an early phase that the situation must be accepted. A change
over time was noted even among those who had not accepted the
situation, and although they continued to have major difficulties, it
became easier over the years to handle the consequences.
Discussion
The emotional reactions to a visibly different hand were linked
to a changed appearance and a feeling of being exposed. Recol-
lecting the accident could result in nightmares and sleeping dis-
orders. A change of personality, due to insecurity, sadness, and a
sense of being less worthy after the amputation, was also
expressed. The consequences for social interaction included social
insecurity and an impact on relations and life roles. Adapting to
social challenges comprised hiding or exposing the hand, using
personal internal resources, and receiving support from others. For
those who were dissatisfied with their appearance or had not come
to terms with the disfigurement, the esthetic prosthesis was seen as
normalizing and offering social security. For some the esthetic
prosthesis was crucial for social participation. It could also be a tool
in the emotional process, functioning as a bridge between the
former and the current appearance.
The SF-36 survey instrument was used to give additional in-
formation about the participants’ self-perceived health status,
providing a background description of the group. Two subscales of
the SF-36 have been categorized as measuring participation: role
physical and role emotional.25 It is notable that the participants’
result on the role emotional subscale is low compared to that of a
general Swedish population. The mean value for the subscale social
functioning, which measures role limitations due to emotional
problems, is also lower than normal.24 This reinforces the view that
the amputation affected the participants’ social participation.
The appearance-related concerns, for instance, feeling abnormal
and ugly or being hypervigilant regarding the reactions of others,
can be likened to the concept of body image. Body image consti-
tutes the feelings and attitudes a person has toward their own body
and has been defined as “the combination of an individual’s psy-
chological experiences, feelings, and attitudes that relate to the
form, function, appearance, and desirability of one’s own body
which is influenced by individual and environmental factors.”28 In
line with previous studies, our findings highlight the complexity
surrounding body image.11 There were participants who had
6 F. Kristjansdottir et al. / Journal of Hand Therapy xxx (2019) 1e7
suffered a major amputation injury and yet signalized satisfaction
with both appearance and function, as well as the opposite; minor
amputations generate extensive psychological struggles.
The impact of the amputation on relations and life roles varied.
Loss of friends and changed interaction with a child or spouse were
given as examples. This reflects the results from a study on changes
in life roles after hand injury which found alterations in the daily
patterns and routines after injury and advocates a “top-down”
approach to treatment.29 In a “top-down” approach, the person’s
roles, habits, and activities are identified and used as a starting
point for appropriate treatment interventions to minimize the
impact on life roles.30 Motivating occupations and relationships
that are important to the individual should be maintained and,
when needed, facilitated in recovery after a hand injury.8
Various strategies were used to cope with the situation and its
possible stigmatizing consequences.31 One of the major benefits of
the esthetic prosthesis, described in this study, was that it offered
the possibility of concealing the visible difference. This can be
related to the term “passing,” meaning that the individual, by
concealing their condition, becomes a part of the “normal” group.32
Although concealment may enable social participation, it might
also exacerbate the underlying psychological distress.33 Thus, the
esthetic prosthesis can be a facilitator for social interaction and, at
the same time, perpetuate unsolved psychological struggles. This
raises the question of whether some would have benefited more
from appropriate psychological support than from receiving an
esthetic prosthesis or at least from the 2 in parallel. Over time,
desensitization to the reactions of others can occur, but to reach
that level of adaptation, the person must be exposed to others
rather than preserving their negative feelings by isolating them-
selves and hiding the injury.5,34 Some said that once everyone had
found out about their situation, they no longer used their pros-
thesis. People no longer paid any attention to the amputation,
indicating that a certain amount of exposure could facilitate
adaptation. It has been proposed that those who are forced to
expose their difference (e.g., facial burn scars) and confront the
reactions of others learn to adapt to their altered appearance.34
Methodological considerations
The various aspects of trustworthiness were taken into account
in the study. Credibility was addressed by using purposive sampling
to create variation in age, gender, and level of amputation. To
strengthen dependability, the interviews were read independently
by the authors and thereafter coded and discussed in depth, so-
called analyst triangulation.35,36 The authors, through their
respective professional backgrounds, were also able to contribute
different views. A constant focus on the text throughout the whole
process of analysis limited the risk of predetermined interpretation.
This is important since some of the participants had been treated by
the interviewer which may have influenced the interview situation.
The interplay between the interviewer and the person being
interviewed may affect the responses. In this case, it may even have
deepened the conversation and the narratives being shared. Ex-
amples of the abstraction and interpretation process are provided
in Table 3 to demonstrate the interpretation of the text, and
representative quotations from the transcribed texts are given to
make the interpretation visible to the reader. Confirmability was
ensured by continuously clarifying and confirming information
during the interviews. A possible limitation may be the time span of
2 to 5 years after the amputation. These time frames were chosen to
capture a wide range of participants’ perspectives and experiences.
Whether or not the transferability of the results is applicable also to
other groups of hand injured patients having a visibly different
hand is yet to be confirmed. The results should be considered in the
light of the participants being a group who, for some reason, had
received an esthetic prosthesis.
Clinical implications
Providing esthetic prostheses is a time-consuming and costly
intervention and should preferably be given to them who need it
the most. A deepened knowledge concerning social participation
following amputation and the impact of an esthetic prosthesis may
contribute to targeted rehabilitative interventions for this group of
patients. Its contribution in facilitating social participation can
justify the prosthesis being used only for a limited period of time.
Therapists, working with hand rehabilitation, may risk
becoming accustomed to hands that look different, where only the
extremes stand out. The consequences for individuals with minor
amputations are thus at risk of being underestimated or overlooked
by the therapist. There is also a risk of the person never being
referred to the rehabilitation unit by the doctor for the same reason.
Individual circumstances and needs must always be taken into
account and questions about the appearance and how it may affect
social participation must be asked.
Conclusion
In conclusion, the present findings show the complexity of
handling emotions and social relations after an acquired amputa-
tion. In those struggling with appearance-related concerns, an
esthetic prosthesis can play a normalizing role and offer social se-
curity which facilitate social participation during the adaptation
process or in a long term.
Acknowledgments
The authors thank the participants for sharing their experiences.
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