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Disability and Rehabilitation
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
Meanings of “acceptance” for patients with long-
term pain when starting rehabilitation
Gabriele Biguet, Lena Nilsson Wikmar, Jennifer Bullington, Berit Flink &
Monika Löfgren
To cite this article: Gabriele Biguet, Lena Nilsson Wikmar, Jennifer Bullington, Berit
Flink & Monika Löfgren (2016) Meanings of “acceptance” for patients with long-term
pain when starting rehabilitation, Disability and Rehabilitation, 38:13, 1257-1267, DOI:
10.3109/09638288.2015.1076529
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DISABILITY AND REHABILITATION, 2016
VOL. 38, NO. 13, 1257–1267
http://dx.doi.org/10.3109/09638288.2015.1076529
RESEARCH PAPER
Meanings of ‘‘acceptance’’ for patients with long-term pain when starting
rehabilitation
Gabriele Biguet
1
, Lena Nilsson Wikmar
1
, Jennifer Bullington
2
, Berit Flink
1
, and Monika Lo
¨fgren
3
1
Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Stockholm, Sweden,
2
Department of Health Care Sciences, Ersta Sko
¨ndal University College, Stockholm, Sweden, and
3
Department of Clinical Sciences,
Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden
ABSTRACT
Purpose: The study aimed to elucidate the meaning of acceptance in relation to the lived body and
sense of self when entering a pain rehabilitation programme. Methods: Six women and three men
with long-term pain were interviewed. The interviews were analysed according to interpretative
phenomenological analysis. Results: The analysis revealed three different meaning structures, first:
acceptance as a process of personal empowerment, ‘‘the only way forward’’. Here, the individuals
expressed that the body felt integrated: a trusting cooperation between self and body gave rise to
hope. Second: acceptance as an equivocal project, a possible but challenging way forward. The
hopeful insight was there, acknowledging that acceptance was the way to move forward, but there
was also uncertainty and doubt about one’s ability with a body ambiguous and confusing, difficult
but important to understand. Third, in acceptance as a threat and a personal failure, ‘‘no way
forward’’ the integration of the aching body in sense of self was impossible and pain was
incomprehensible, unacceptable and unfair. Pain was the cause of feeling stuck in the body,
affecting the sense of self and the person’s entire life. Conclusions: The meaning of acceptance was
related to acceptance of the persistency of pain, to how the individual related to the lived body and
the need for changes in core aspects of self, and to the issue of whether to include others in the
struggle of learning to move on with a meaningful life.
äIMPLICATIONS FOR REHABILITATION
Healthcare professionals should be aware that individuals with long-term pain conceptualize
and hold different meanings of acceptance when starting rehabilitation; this should be
considered and addressed in rehabilitation programmes.
The meaning given to acceptance is related to the experience of the lived body and the sense
of self, as well as to getting legitimization/acceptance by others; therefore these aspects need
to be considered during rehabilitation.
The process of achieving acceptance seems to embrace different processes which can be
understood as, and facilitated by, an embodied learning process.
The bodily existential challenges presented in the present study, for example to develop an
integrated and cooperative relationship with the painful body, can inspire health professionals
to develop interventions and communication strategies focusing on the lived body. A wide
range of competencies in rehabilitation clinics seems to be needed.
KEY WORDS
Acceptance, chronic pain,
lived body, sense of self
HISTORY
Received 1 October 2014
Revised 20 July 2015
Accepted 22 July 2015
Published online 21 August
2015
Introduction
Chronic or long-term pain, usually defined as pain
lasting at least three to six months [1], is highly prevalent
in western societies [2–4]. It is generally understood as a
multidimensional phenomenon, often requiring a multi-
disciplinary treatment approach [5–7]. The aetiology is
considered multi-factorial and thus physiological, psy-
chological, socio-cultural and existential aspects should
be taken into account [5–7].
A growing body of qualitative research shows that
patients’ experience of long-term pain and its conse-
quences, such as fatigue, cognitive impairment, anxiety
and depression [8], affects all aspects of life, for
example sense of self and self-identity [9–11], one’s
experience of the body [6,12,13] social and work role
function [14], and personal relationships with significant
others, including family, friends and health professionals
[11,15].
Address for correspondence: Gabriele Biguet, RPT, MSc, Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska
Institutet, P.O. Box 23100, SE 14183 Huddinge, Sweden. Tel: +46 852488825. gabriele.biguet@ki.se
ß2015 Taylor & Francis
To live with long-term pain is a constant struggle
[16,17], for example with legitimacy, credibility and
personal integrity and the experience of being a burden
on society [11,16,18]. There is also a struggle with social
stigmatization [19] the loss of certainty for the future,
and confidence in the ability to negotiate the healthcare
system [16]. Several studies also highlight the patient’s
struggle with the restrictions of their body and the
fundamental relationship with the body and self; a sense
that the body is no longer ‘‘the real me’’ [13,16]. The
body becomes a burden to the extent that it may be
regarded as a treacherous [20] and a malevolent ‘‘it’’ [13].
Despite this multi-level struggle, there is also a sense
of moving forward alongside pain when confronted with
the reality of learning to live with long-term pain [16].
Becoming knowledgeable, listening to and integrating
the painful body, redefining normal and reconstructing
an acceptable new self and social support were import-
ant facilitators as well as the fact that one had accepted
one’s situation and finished grieving over losses [16,17].
However, many patients have reported that health-
care fails to meet their needs and expectations. Instead
they feel stigmatized when they do not receive a
diagnosis [21], when staff is ignorant of the reason for
their pain and when they get no support for pain
management [18,22]. People have described being left
on their own to find a way to live with long-term pain.
Those who defined themselves as successful in
managing to accept and learn to live with pain tell of
a challenging process which included giving up the
struggle with pain, refining values and goals in life,
adjusting activities and acquiring self-management
strategies and knowledge about themselves and the
pain [23,24]. Helpful for a positive process was being
believed by health professionals and significant others,
getting support and explanations, and acquiring strate-
gies to influence the pain, disability and psychological
distress [16,25]. Another important prerequisite was
acceptance that the pain is there to stay, a cure unlikely
[24–26]. This process can be understood as one of
continuous adjustment, where acceptance and adjust-
ment are interrelated, though the relationship is com-
plex [11,24].
The factors hindering acceptance and a positive
adjustment process seem to be absence of, or a delayed,
diagnosis [23], a struggle to retain the pre-pain self,
negative effects on relationships, others not accepting
the sufferer’s pain and disbelief by health professionals
[24]. Factors facilitating acceptance include social sup-
port, educating oneself and others, redefining one’s self
and identity, knowledge about the pain condition and
learning self-management strategies [24]. Risdon et al.
[26], who generated an understanding of acceptance
from a cultural perspective rather than from the sole
perspective of individuals living with long-term pain,
also highlighted a shift of focus from pain to non-pain
aspects of life and the importance of rejecting the idea
that acceptance is a sign of personal weakness.
Furthermore, the authors emphasized the diverse ways
in which understanding of acceptance can be made.
Although a relatively recent area of inquiry, accept-
ance appears to be a promising direction within the
context of long-term pain. Studies using correlational
methods have shown that a higher level of acceptance,
as measured by acceptance of pain, is associated with
better physical, social and emotional adjustment and
with improved work status [27]. Further, there is support
for associations with lower pain intensity, superior daily
functioning, fewer depressive symptoms and good
quality of life [27,28]. Acceptance of pain is also an
important predictor of successful rehabilitation [27].
Thus, Samwel et al. [29] found that individuals who are
able to accept their condition are especially likely to
benefit most from multidisciplinary pain rehabilitation.
They discuss acceptance of pain as an important
adaptive coping strategy.
Today, the mediating role of acceptance in treatment
processes and the potential for acceptance-based treat-
ment in long-term pain is established and has received
considerable attention [30,31], especially in multidiscip-
linary pain rehabilitation, aiming to support patients in
their process of accepting and learning to live as well as
possible with pain. It is worth noting that acceptance
of pain has also been highlighted as an important
mediator in multidisciplinary rehabilitation, even when
acceptance is not specifically targeted. An example here
is traditional cognitive-behavioural-therapy-based treat-
ment [32].
Acceptance and commitment therapy (ACT), is a
common psychological intervention, addressing accept-
ance specifically. With focus on the importance of living
with pain rather than avoiding it, ACT emphases is
placed on the realistic acceptance of ‘‘function regard-
less of pain’’, and is now a recommended treatment
approach showing efficacy in chronic and long-term
pain [33]. In ACT the concept of acceptance is formally
operationalized into two core constituents: ‘‘pain will-
ingness’’ and ‘‘engagement in activities’’. It is usually
measured with the Chronic Pain Acceptance
Questionnaire [27].
However, several authors have pointed out that there
is more to accept than pain and have argued for the
need to broaden the concept of pain acceptance to
include acceptance of other discouraging, painful or
unwanted experience related to pain, viewed as general
psychological acceptance. Today, both pain acceptance
1258 G. BIGUET ET AL.
and general psychological acceptance are components
of a wider model of psychological flexibility, the core
therapeutic focus in ACT [34,35].
In a critical review of measurements of acceptance,
Lauwerier et al. [36] observe that acceptance is a multi-
facetted concept which is defined in various ways
depending on the measurement instruments used. The
authors urge the reader to step back and get further
insight into the features of acceptance and reflect on
how acceptance is best measured.
There is also a risk that the spirit of the term
acceptance can be misunderstood or oversimplified,
both generally and in relation to long-term pain [27].
Depending on whether acceptance is understood as
an operationalized variable, a psychological construct
or as a lived experience of a process by people with
long-term pain, acceptance might be viewed in differ-
ent perspectives. For example, acceptance may be a
personal and individualized process with varying
degrees of resistance or readiness as the experience
unfolds.
Despite the wealth of quantitative research into
acceptance and long-term pain, we still seek to under-
stand more about the lived experience and the individ-
ual meaning of acceptance, for people with long-term
pain. Only thus can we understand the point of
departure for the individual patient wishing for a
person-centred rehabilitation.
As a consequence, a naturalistic study approach
utilizing qualitative methodology is needed. This is in
line with Osborn and Rodham [10], who point out that
concepts considered well-established in quantitative
research literature, e.g. acceptance, are seldom referred
to in qualitative studies. Furthermore, psychological pain
research has been criticized for ignoring the lived
experience of the body, although long-term pain
incorporates both physical and psychological experi-
ence, encompasses a complex relationship between the
body, the self and pain [13]. As mentioned previous, the
lived experience of long-term pain points to a world
fundamentally changed by a body in pain, a change that
is existential in character [20]. Thus, there is a need to
explore the experience of and the meaning given to
acceptance from a bodily-existential perspective, i.e. in
relation to the lived experience of the body and the
appraisal of the self.
Aim
The present aim was to elucidate the meaning of
acceptance in relation to the lived body and sense of self
among individuals entering a pain rehabilitation
programme.
Methods
Study design and methodological considerations
The present work is part of a longitudinal study
investigating the meaning and the process of accept-
ance during a 16-week rehabilitation programme.
Individuals with long-term pain will be interviewed
three times, at the beginning, in the middle and at the
end of the rehabilitation. This paper analyses the initial
interviews. Ethical approval for the study was obtained
from the regional ethical board in Stockholm
(Registration No. 2010/138-31/1).
To explore the embodied nature of acceptance in the
context of long-term pain as well as to bring out the
diversity and variation in individuals’ experience, inter-
pretative phenomenological analysis (IPA) was chosen
[37,38]. Normally using small carefully selected samples,
IPA is suitable for exploring what an experience, a
process or a relationship means to an individual in a
specific context [39]. It involves researchers’ reflections
on their own preconceptions and values and the
interplay between the participant’s and the researcher’s
interpretation of the accounts investigated [37]. With
this in mind, the pre-understandings were the research-
er’s experience in qualitative research methodology and
clinical work as a physiotherapist with patients with
long-term pain. These pre-understandings were articu-
lated in the research group in order to become thematic
at the outset of the study.
Participants
Patients in an outpatient, multi-professional-team-based
pain rehabilitation programme in Sweden were asked to
participate. Inclusion criteria were attendance at the
programme, fluency in Swedish and an interest to
discuss and reflect on embodied and existential experi-
ence in relation to persistent pain.
The rehabilitation teams’ coordinators informed pro-
spective participants of both sexes and varying ages,
duration of pain and diagnosis. Those interested were
contacted by the first author. Ten agreed to participate
and signed an informed-consent form. One withdrew
before study completion, lacking interest in the project
and finding it too time-consuming.
The final sample consisted of six women and three
men aged from 24 to 52 years, with 2.5 to 15 years of
musculoskeletal pain. The most common diagnosis was
widespread pain and there were one or more further
diagnoses. None had previously attended a pain
rehabilitation programme but had experienced a wide
range of treatments before being referred to the pain
rehabilitation clinic. Two of the participants were born
outside Sweden but spoke fluent Swedish.
MEANINGS OF ACCEPTANCE 1259
The participants’ education/work varied widely, e.g.
healthcare worker, salesman or restaurant manager.
Three were studying at university (Table 1).
Multi-professional pain rehabilitation
programme
The pain rehabilitation programme lasted for on average
16 weeks, followed evidence-based principles and con-
sisted of cognitive behavioural therapy, education,
group discussion, physical exercise, body awareness
therapy, mindfulness and occupational training such as
pacing and goal-setting. Patients referred to the pro-
gramme suffered from impaired physical function and
limitations in their daily activities and work performance
related to long-term pain. Individuals with severe
psychiatric disorders were excluded as were alcohol or
drug abusers.
Interviews
The participants were interviewed by the first author.
Two test interviews were conducted in order to develop
a semi-structured interview guide. The interviews took
place at the rehabilitation clinic, and lasted between 60
and 90 min. They were audio-taped and transcribed
verbatim by the first author and a secretary not involved
in the study. In the interviews, the participants were
encouraged to narrate their experience of living with
persistent pain, how to cope with the situation and how
to find meaning in everyday life. They were also asked
about their experience of the body, sense of self and
their relationship to significant others. Finally, they were
asked to share their thoughts about the future and their
personal goals in the rehabilitation programme. The
questions were not directly focused on the concept of
acceptance, which could be somewhat difficult to grasp.
A typical question was; ‘‘Could you describe a typical
day?’’ or ‘‘What makes a day become a good one in your
life?’’ and ‘‘Can you describe that particular day in more
detail?’’ Emphasis was put on descriptions of bodily and
existential experience, such as issues relating to identity
and the feelings, attitudes and beliefs about themselves
and their body, so as to get accounts of the person’s
lived experience reaching beyond what he or she had
consciously thought about.
Data analysis
The interviews were analysed according to the IPA
method, using the step-by-step process outlined below
as a set of flexible guidelines [37]. The analysis was done
by the first author (G.B.) in close connection with the last
author (M.L.). Step one started with several close inter-
pretative readings of the first case transcript, noting
comments on everything that seemed significant. The
comments were descriptive, linguistic (exploring the use
of language, pauses, laughter, repetition etcetera) and
conceptual (an interrogative dialogue between the
researchers’ pre-understandings, professional know-
ledge and the emerging meaning of the participant’s
experience). The second step involved returning to the
transcripts, now seeking and noting emerging themes.
In this step precautions were taken to maintain the
connection between the participants’ accounts and the
researchers’ interpretation. The content of the emerging
themes was checked in discussion between GB and ML.
In the third step the emerging themes and the short
statements were examined and analysed in order to
cluster them into higher-order statements. The state-
ments included meanings of the persistency of pain in
relation to bodily experience, to the sense of self and to
significant others. These meanings were explored in the
light of how they related to acceptance as a means to
find a new way to live with long-term pain. A brief
illustrative outline of each case was established along-
side, with a few essential statements. This process was
repeated for each case, the vertical path of the analysis.
Table 1. Participants’ characteristics.
Gender
Age
(years) Diagnosis
Duration of
pain (years) Occupation Work status
Sick
leave (%)
W 47 Widespread musculoskeletal pain 2.5 Restaurant 0 100
W 25 Fibromyalgia 5 Student Full-time student 0
M 52 Osteoarthritis, shoulder and cervical strain 10 Transport service Part-time work (50%) 50
W 26 Fibromyalgia 3 Student Full-time student 0
W 31 Widespread musculoskeletal pain 5 Artist Full-time work 0
W 48 Osteoarthritis, widespread musculoskeletal pain 3 Teacher Part-time work (50%) 50
M 46 Osteoarthritis, widespread musculoskeletal pain 15 Transport service Part-time work seeker 75
M 47 Widespread musculoskeletal pain 6 Salesman 0 100
W 24 Fibromyalgia 7 Healthcare professional/student Full-time work/student 0
W, women
M, men.
1260 G. BIGUET ET AL.
In the last step, the outlines of each case were analysed
horizontally looking for overarching themes and pat-
terns so as to establish general meaning, or qualitatively
different meaning structures of the phenomenon
acceptance.
Results
The analysis revealed three different meaning structures
of acceptance: acceptance as a personal empowerment
process, ‘‘the only way forward’’; acceptance as an
equivocal project, ‘‘a possible but challenging way for-
ward’’ and acceptance as a threat and a personal failure,
‘‘no way forward’’.
Each meaning structure included the participants’
overall attitude to living with persistent pain, and the
relationship to their body in pain and to their sense of
self and significant others. An overview of the charac-
teristics in the three different meaning structures is
presented in Table 2.
Acceptance as a personal empowerment process,
‘‘the only way forward’’
Acceptance as an overall attitude is characterized by
being open for possibilities, looking forwards and being
inquisitively explorative. The process of acceptance is a
hard-won, ongoing project often triggered by a specific
turning point. Other ways have been tried, when the
insight was reached that the responsibility was personal,
that this was the only way to live life with pain.
Acceptance is about being in charge and having the
tools to frame/reframe one’s life. Efforts have been made
not to identify oneself with pain. Typical statements
were:
One can make the difference... I am the one in charge of
the change. (Woman, 47 years)
I am ready to make the changes and I project myself into
the future. (Woman, 25 years)
I have realized that pain is a part of me but it does not
define me as a person. (Woman, 25 years)
Acceptance as relating to long-term pain means that pain
is familiar and no longer frightening. Pain and one’s own
reactions to pain have become, at least to some extent,
predictable and understandable, as there is a model for
understanding. It is possible to influence pain and one’s
reactions by cognitive and behavioural change. The pain
is no longer controlling life and is not a separate entity.
There is no longer any shame or blame to oneself or
others for having long-term pain.
The pain is neither an enemy nor my best friend, but
pain is here and I have to accept it. (Woman, 47 years)
Acceptance as relating to one’s own body in pain means
striving towards integration of the body into the
experience of self; not separating the body and the
self. There is an awareness of the signals from the body
and the state of mind and an inner dialogue about how
to balance both needs. A participant articulates this
particularly strongly:
Now my body decides together with my head. Yes, now
they’re working together... so my head says, ‘‘now we’re
going to the laundry-room’’ – ‘‘Nah, nah’’, says my body,
‘‘that’s just what we’re not doing’’... (Woman, 47 years)
The body is experienced as a guide to set limits, but also
to satisfy needs. One can incorporate the body as both a
possibility and a hindrance. The body is able: ‘‘I can’’, but
in a different way. It is again possible to enjoy the body.
Good balance and flow in movements are important
goals and something to strive for. They are achieved by
placing the pain more in the background.
I have learned to accept what one can do and what one
cannot ... I have learned to do things differently...
(Woman, 25 years)
Table 2. Characteristics of the three meanings of acceptance.
Acceptance as a personal empowerment process, ‘‘the only way forward’’
‘‘I can be in charge and I can make a difference’’ (pain is understandable and possible to affect)
‘‘I can do everyday activities – but in a different way’’ (the body as a resource and important guide)
‘‘I can manage it and I’m still the same person’’ (I’m proud to manage it)
‘‘I can manage it with support from others’’ (acknowledging the need for support from others)
Acceptance as an equivocal and uncertain project, ‘‘a possible but challenging way forward’’
‘‘How can I understand pain – Is there a pattern?’’
‘‘How can I relate to the ambiguous and lived body?’’
‘‘How can I trust my own ability and manage uncertainty and responsibility?’’
‘‘How can I communicate and socialize with significant others?’’
Acceptance as a threat and a personal failure, ‘‘no way forward’’
‘‘The pain sends me out of control and without responsibility’’
‘‘The pain makes me feel entrapped and disappointed with my body’’ (The body is no longer me)
‘‘The pain makes me be who I am’’ (I’m a person in pain)
‘‘The pain makes me feel shame and guilt towards significant others’’
MEANINGS OF ACCEPTANCE 1261
The participants in this group gave rich descriptions that
acceptance means a willingness to experiment and find
creative solutions. However, most of all acceptance
means opening up to the possibility of experiencing
new and somehow surprising bodily sensations. For
example the 47-year-old woman described being alone
at home and having to go out with her dog despite pain.
She became aware of a release of demanding thoughts,
walking slowly in the fields on soft ground and enjoying
the surroundings, relieved of the experience of her pain.
Acceptance as relating to self and others is to
understand that nothing can be as before, that one
has to redefine what is important in life, one’s personal
values and goals. This does not mean that the core
aspects of the self will change; ‘‘I am always the same’’.
The responsibility is personal; ‘‘I am the one in charge of
the change’’. The frame of reference is personal; it is not
about comparing oneself with others or one’s own
abilities pre-pain. The pain is seen in a contextual frame
where the person and the world are inseparable. There is
no shame related to the self and no blame to others for
what has happened or for the present situation. It is
acknowledged that significant others are needed, and it
is important to communicate and to ask for help and let
others participate in one’s life.
I’ve always ... bottled it up and it’s been MY problem.
But it’s not my problem. There are quite a few people
around me. And I’ve many, many who care about me
and I like and so on and they don’t want me to feel
poorly and not tell. But I thought they didn’t want me to
tell. (Woman, 47 years)
The 47-year-old woman further recounted that her
husband did not want to be set aside, as she kept the
experience of pain to herself; thus she emphasized the
importance of placing the experience of pain in a
relational context:
People can tell very clearly when I’m not in the mood
and just when it’s because of my pain; then he’s got
angry because he thinks I shouldn’t have to go around in
pain just because he suggests things to do, but I do
actually have to say no. But I’ve always been like that all
my life and it’s hard to change now. But we’ve found a
good level. (Woman, 47 years)
Acceptance as an equivocal and uncertain
project, ‘‘a possible but challenging way
forward’’
Here acceptance as an overall attitude is characterized by
contradictions, struggle and ambivalence. While there is
an understanding that acceptance is a way forward, it
is one that is difficult and uncertain. Often a turning
point can be described, where it was obvious that life
could not go on like this: ‘‘there have to be other
alternatives to e.g. drugs’’ (Woman, 31 years). However,
there is some doubt about one’s own ability, the
resources of the body and the self, and about what
concrete strategies to use.
Acceptance as relating to long-term pain is to under-
stand that the pain is here to stay: it is restricting life in
one way or another. Pain is also understood as a
message to set limits and to say no. In this way pain is
understood as one’s own responsibility, sometimes
causing feelings of shame and being overwhelmed.
However, pain is also experienced as diffuse: it is difficult
to distinguish from, often tangled up with, feeling ill,
anxious and depressed. Sometimes bodily pain and
mental pain are difficult to separate. The pattern of pain
is not clear but there are some experiences of ability to
influence it and of the consequences of being compelled
to live with it. These encourage the individual towards
an attitude of acceptance.
Acceptance as relating to one’s own body in pain is
experienced as the duality of acknowledging the body
as both a resource and a hindrance. The body is
irritating, it demands attention. The body and the self
are not fully integrated but work is on-going. The history
of one’s own body is often seen as a matter of fact, ‘‘a
weak back will always be a weak back’’ (Man, 52 years),
which is nevertheless a challenging problem.
Earlier the body has been ignored, now the well-being
of the body is in focus, e.g. to be regular, to eat well, to
sleep, to relax, to be physically active, everything is
important in order to take care of the body. These needs
can be perceived as overwhelming, giving rise to
feelings of doubt as to whether one can move forward.
The reactions of the body are not always predictable, but
sometimes the body gives positive surprises, supporting
the move towards acceptance. But the pain still dom-
inates activities.
Acceptance as relating to self and others involves an
on-going re-definition. The pain is experienced as a
threat to self, there is a fear that pain will take over one’s
life. This would mean ‘‘being left without possibilities for
a future’’ (Woman, 26 years). The responsibility is
personal, but it is not clear how it is to be handled.
Acceptance is experienced as a challenging personal
project which needs time and priority. Here, a strong
feeling of duty and caring for others is replaced by a
feeling of care of oneself and of being an inconvenient
person as well as a patient. This generates guilt towards
significant others. But guilt does not stop them, there is
no other way. It is hard to ask others for help, this is their
own project. Sometimes others have been a disappoint-
ment, and therefore it can be hard to involve and
communicate with them.
1262 G. BIGUET ET AL.
It was so seldom one had time to keep these hours for
oneself, even though sometimes I tried to shut the door,
but that was a bit difficult. (Man, 52 years)
Acceptance as a threat and personal failure, ‘‘no
way forward’’
Acceptance as an overall attitude is here characterized by
being an unacceptable approach. The idea of accept-
ance is experienced as a threat to self and/or a personal
failure: there is no hope anymore; or taking responsibility
is of no use. The sense of inability to make a difference is
strong and acceptance means giving in and giving up
one’s self. The only hope is that one day a miracle will
happen and the pain will disappear. It is important to
receive validation that the pain is real and not just in the
‘‘head’’.
I will never accept that I have pain, the pain is physical
and ... if something is physical someone can do
something about it. (Man, 46 years)
The pain is like a tick, it’s irritating, distracting and
weakening. (Woman, 48 years)
I don’t want to have pain anymore; it doesn’t matter
whether the pain is gone or if I manage to stop thinking
about it. (Man, 47 years)
Acceptance as relating to long-term pain is a difficult
issue. The fact that pain is a persistent condition is
impossible to understand. The pain has no meaning and
the mind is occupied with questions like: ‘‘why am I not
getting better at all?’’ (Woman, 48 years), ‘‘why me, it’s
unfair?’’ (Woman, 24 years). When the pain is the result
of an accident or has arisen from long-term overloading
of the body, self-accusation occurs. The search for a cure
is overwhelming, strategies used are to wait for a cure
and avoid anything that can remind one of the pain.
Acceptance as relating to one’s own body in pain is
experienced as the body being a major hindrance. The
body in pain constantly makes itself felt in restricting
everything; it is in the foreground, hard to see beyond it.
This focus upon the restricting body closes off all
possibilities to experience acceptance.
The body is constantly screaming and shouting for help,
but I don’t know what the body wants. I’m shouting
back, I don’t know what to do! (Man, 46 years)
The pain restricts, precludes natural activities such
as sitting on the floor with crossed legs. The body
constantly reminds one of one’s incapability: ‘‘I cannot
do ...’’. The body is experienced in parts, while the
experience of not being able to co-ordinate the parts
into smooth movements is strong and preoccupying. It
is also impossible to understand that different parts
affect each other: ‘‘why does my knee trouble cause pain
in the neck?’’ (Woman, 48 years).
I really know all about my bodily dysfunctions and what
the body is made of, but I don’t know how one can get
to know one’s body in a different way. (Man, 46 years)
The body gives no enjoyment, no positive experience or
feelings; only tiredness, irritation and frustration. One
cannot rely on a body that is a constant disappointment,
as the good days never last and the hope for a cure
fades. With these perceptions, there is no moving
forward for these individuals.
Acceptance as relating to self and others is perceived
as a risk of losing one’s self. The only thinkable solution
is for life to return to what it was before the pain. The
consequences of pain are experienced as a threat to the
self, preventing one from doing things one used to,
making one different from before. Most energy is spent
on protecting oneself against these assaults. Different
strategies are used. One is to make other people
understand and accept the situation; that no demands
can be met or that pain makes every change impossible.
This is protecting the self against accusations of being a
fake or a malingerer. One longs to avoid explaining
oneself; explanation is experienced as stressful and an
assault on the self. Shame and guilt are felt at not being
able to be as one used to be, socially involved, helpful to
others. Instead of being seen as self-centred, selfish,
unhelpful or unsocial, one chooses to withdraw, isolate
and separate oneself. Spouses and children could be
reminders of this personal failure and are therefore kept
outside or at a distance. Thus has the experience of pain
alienated the person from him/herself and others. This
way of living pain and the body renders acceptance
impossible.
My spouse really understands that I need to be alone
(when in pain), trying hard not to intrude on my life.
(Man, 46 years)
Discussion
Three different meaning structures of acceptance
emerged from the analysis. ‘‘The only way forward’’
highlights acceptance as an ongoing process of being in
charge of the changes needed in all aspects of life. The
meaning structure ‘‘a possible but challenging way
forward’’ demonstrates ambivalence and ambiguity, a
challenging process to integrate the body into oneself.
Here, acceptance is a possible way to move on with life,
but there is also a feeling of uncertainty and doubt
about one’s own ability. The meaning structure ‘‘no way
forward’’ highlights acceptance as a threat to one’s
MEANINGS OF ACCEPTANCE 1263
sense of self: acceptance could be experienced as a
personal failure.
These findings show that individuals with long-term
pain are a heterogeneous group with unique interpret-
ations of what it means to accept, adjust, and live with
long-term pain. Acceptance was understood as a process
of realizing and acknowledging that the pain will not
stop so it is better to learn to live with it; that body and
self will not be as formerly and that help from others is
needed. Learning to live with long-term pain is more
than coming to terms with one’s situation or managing
the pain; it is about getting back on track and moving
on with a meaningful life. And it is about accepting
change.
The process of acceptance can also be understood
in terms of resilience [40]. Resilience supports individ-
uals in managing long-term pain; by recognizing
personal strength (not giving in to the pain), acknowl-
edging that pain does not stop and one has to accept
pain as part of who one is, looking for the positive
aspects of life, learning to accept help from others as
well as helping others to help oneself. Empowerment
– keeping one’s personal strength in the foreground
so as to focus on what is pleasurable in life and not
on aspects where pain dominates – has been high-
lighted by others [26].
In the present study, bodily experience emerged as an
important part of acceptance. The participants in the
different meaning structures related differently to the
lived experience of the body, especially the body in pain.
Those who experienced acceptance as ‘‘no way forward’’
related to the body as restricted and found it hard to see
beyond those restrictions. They were trapped in the
present moment, where everything circulated around
pain. This is also noted by Finlay [41], who described
such experiences as ‘‘pain is the body and pain is the
world’’. Our participants who experienced acceptance as
‘‘a possible but challenging way forward’’ related to the
body as both a resource and a hindrance. These
ambiguous bodily experiences confused them and
they did not fully trust their own ability to manage the
challenges. This made acceptance a doubtful and
ambivalent project. Those who experienced acceptance
as ‘‘the only way forward’’, however, related to the body
as a resource where they could feel satisfaction and get
valuable information.
In all three meaning structures, the bodily experience
was intertwined with experience of the self. This is in line
with Merleau-Ponty’s [42] claim: by re-establishing con-
tact with the body and the world, individuals can
recreate the contact with their self. In addition,
Bullington [6] argues that individuals with long-term
pain need to redefine and accept the body and the self,
in order to develop and normalize new routines in
their lives.
The participants in the meaning structure ‘‘the only
way forward’’ gave many examples of regaining
activities by changing their ways of doing things: they
changed their experience and thinking from ‘‘I cannot’’
to ‘‘I can’’. On their path towards acceptance they had
learned to be sensitive and to pay attention to bodily
signals, to relax and slow down. They did not fight
against the body but lived with a body in pain, by
building some kind of companionable relationship. They
learned that their body could be more than a source of
pain, their self more than an entity in pain. The split
between the self and the body was reconciled.
Learning to accept and live with long-term pain is
described as an embodied learning process. Such
processes have been described in relation to physio-
therapy group treatment, comprising positive experi-
ence of the body such as awareness of physical capacity,
relaxation and acknowledging limitations and changing
patterns of activity [43]. Raheim and Haland [20] also
highlighted embodied learning in people compelled to
live with long-term pain. They found that women’s lived
experience of their body in pain can be related to three
typologies: at the will of the treacherous body –
powerlessness, struggling to escape the treacherous
body – ambivalence and caring for the treacherous
body – coping. These typologies are in line with our
findings.
Bury [44] argued that a loss of confidence in the body
and self results in a loss of confidence in social
interaction. Perceived support is an important part of
social interaction. Lack of support represents a barrier to
acceptance [11,13,17,24]. Our results demonstrate how
the participants relate in different ways to significant
others and the need for support. Participants within the
meaning structure ‘‘the only way forward’’ highlighted
the importance of communicating and sharing their
experience with significant others. Not letting the pain
and its consequences be a private experience was also
highlighted by Smith and Osborn [9]. Participants in the
structure ‘‘a possible but challenging way’’ highlighted
difficulties in maintaining normal family life when their
social roles were disrupted. They commonly avoided
social interaction when pain made them feel annoyed
and sore. Social life was set aside. In the meaning
structure ‘‘no way forward’’, significant others could be
reminders of personal failure, and therefore kept outside
one’s life or at a distance. Mistrusting others and
shielding oneself from threats to self and identity leads
to withdrawal and isolation. This is in line with Froud
et al. [15], who concluded that social factors such as
relationships with significant others are important to
1264 G. BIGUET ET AL.
individuals with long-term pain; but such factors are not
well emphasized in research and clinical use. Also
Osborn and Rodham [10] highlighted the social and
cultural unpleasantness of living with long-term pain,
emphasizing fear of others’ judgment, social withdrawal
and problems with communicating pain. They con-
cluded that pain appeared to stifle communication.
To summarize our results deepen our knowledge of
acceptance in the context of long-term pain. This
knowledge includes how individuals relate to the persist-
ency of pain and to the body in pain, and to the sense of
self and significant others. These aspects are important
challenges described by our participants, also highlighted
by Bullington [6] and Afrell et al. [12]. Telford et al. [45]
emphasize the importance of avoiding simplistic categor-
ization of individuals’ responses to chronic pain in
acceptance and denial. Instead they argue for encoura-
ging individuals to tell their own stories, their embodied
experience and meaning as the basis for a sensitive
patient-focused approach in healthcare.
Methodological considerations and suggestions
for further research
The interview data provided a rich source of material,
which is needed when attempting to capture the
complexity and diversity of a phenomenon such as
acceptance in the context of long-term pain. The face-to-
face interviews enabled the interviewer to gain fuller
understanding of the participants’ bodily and existential
experience. The interviewer is a physiotherapist, which
may have influenced what issues were raised and how
they were formulated. Nevertheless, the participants
used highly personal language to describe their exist-
ential and bodily experience, somehow different from
normal ‘‘healthcare’’ language. Hence, the interviewer
was surprised at the participants’ rich accounts of bodily
challenges, shortcomings, longings and hopes for the
future. In general, the participants spoke freely, probably
because the interviewer (the first author) had not been
involved in the rehabilitation programme.
A possible weakness of the study is that all the
authors were women and physiotherapists. Researchers
of both sexes and with different professional back-
grounds would have been preferable in view of the
importance of reflexive objectivity. Smith et al. [37]
argued, however, that the systematic process of analysis,
well described in the literature, supports acknowledge-
ment and reflection upon pre-understandings. The
researchers were aware of, and strove to acknowledge,
their pre-understandings, including personal and pro-
fessional experience and beliefs, during the data
analysis.
IPA was considered a suitable method for the present
study as it seeks idiographic understanding before iden-
tifying thematic structures representative of commonality
and divergence across cases. The participants’ variations in
sex, age, occupation, diagnosis, duration of pain and work
status enabled us to capture both essential features and
diversity in their accounts. Thus, the heterogeneity in the
sample supported both validity and transferability of
findings. We consider the study sample was probably not
different from any group of patients usually referred to
pain rehabilitation clinics. However, we cannot claim that
our findings are transferable to individuals in other
contexts, for example primary care or among those not
seeking help in the healthcare system.
We also need studies that explore how pain rehabili-
tation programmes influence the different meanings of
acceptance and how health professionals could support
and empower individuals in their path towards accept-
ance. For this reason, a forthcoming paper will report on
further interviews with the present participants both
during and after the multi-professional pain rehabilita-
tion programme. Our study highlights the importance of
further exploring and understanding the processes of
change involved during treatment, suggested as the
area for the next generation of research in treatment for
long-term pain [10,34,45,46].
Conclusion
Three different ways of experiencing the meaning of
acceptance in order to move on with one’s life were
found: (1) acceptance as the only way, (2) acceptance as a
possible but challenging way and (3) acceptance as a
threat. These meaning structures were related to whether
the individual could accept the persistency of pain, how
she or he related to the lived body and the body in pain,
to changes of core aspects of self, and whether to include
significant others in the struggle of learning to move on
with a meaningful life. The results indicate that healthcare
personnel need awareness that the different meanings of
acceptance can influence the rehabilitation process.
Acknowledgements
We would like to thank all the participants for sharing their
experience.
Declaration of interest
There are no conflicts of interest in this study. We thank
the Pain Rehabilitation Unit at the Department of
Rehabilitation Medicine, Danderyd University Hospital, and
the Department of Neurobiology, Care Sciences and Society,
Division of Physiotherapy, Karolinska Institutet, for funding
this study.
MEANINGS OF ACCEPTANCE 1265
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