of the body. Recent findings indicate
that there is a relationship between
chronic pain and the immune system. As
an illustration, recent work has demon-
strated that thymulin, a thymic hormone
known to activate the immune system,
can produce hypersensitivity and inflam-
mation in the body. This hormone has
also been shown to increase reactivity 
in certain receptors in the peripheral 
nervous system. It can also increase
reactivity in the dorsal horn which can
be reversed by morphine. It was con-
cluded that chronic pain is a reflection of
the cross talk between the nervous,
immune and endocrine systems. This
reflection of homeostatic imbalance
does not depend upon specific pathways
or cerebral centres. “Like other limbic
functions it can emerge at the conscious
level in humans in the form of an
unpleasant experience with psychological
and behavioural changes” (Jabbur and
Saade 1999).

There is evidence that the nervous
system is more dynamic and malleable
than has previously been supposed. This
is known as plasticity. An important
concept in neuronal plasticity is that of

ABSTRACT: Chronic pain sufferers are frequently misunderstood
and stigmatised. The aim of this investigation was to provide a
description of the life-world of people with chronic low back pain,
using the phenomenological method. Themes which emerged were
that the persistent nature of chronic pain makes it particularly 
difficult to endure, arousing a profound fear of the future. Chronic
pain causes a disruption in the relationship between the person and
the body. The person is forced to function within the constraints of
pain and to find ways of coping. Sufferers are unable to fulfil social
roles as expected and are forced to revise their goals and activities to accommodate the pain. The distress of their 
experience is mediated by the ability to make sense of their condition, finding meaning in the pain itself.

This study highlights the value of the phenomenological method in health psychology. Recommendations are made
which may be of benefit to people with chronic pain and their families. The multidimensional nature of chronic pain
is highlighted and implications for various professionals who work with chronic pain patients are discussed.

KEY WORDS:  CHRONIC LOW BACK PAIN; COPING; MEANING; PHENOMENOLOGY; HEALTH PSYCHOLOGY

THE MEANING OF CHRONIC PAIN:
A PHENOMENOLOGICAL ANALYSIS

CORRESPONDENCE TO:
B L Wade

PO Box 131275
Northmead

I511
Tel: (011) 967-2200

Q U A L I T A T I V E
R E S E A R C H

INTRODUCTION
Chronic low back pain is far more than 
a series of nerve impulses which pro-
duce an unpleasant physical sensation.
Although acute and chronic pain may
arise originally from similar tissue 
damage or disease, chronic pain is not
simply acute pain which has become
unusually long standing. Chronic pain
may become a complex phenomenon
over time, which impacts on a persons
life, imposing widespread changes in
relationships, goals and dreams, incor-
porating biological, psychological and
social aspects. Whereas acute pain sub-
sides with healing, chronic pain does not.
Therefore, chronic pain appears to have
no relation to demonstrable tissue 
damage or disease and seems to take on
a life of its own.  Such changes are known
to extend even to the neurophysiology

wind up. If a series of stimuli are applied
in rapid succession to a nerve, the size 
of the impulse generated will increase.
This has important clinical implications.
If pain is present for a long time, it will
become increasingly more painful and
may lead to changes in the nociceptive
pathway (Hawthorne and Redmond
1998). Changes in central pain mecha-
nisms may play an important role in the
generation and maintenance of chronic
pain. What happens in these circum-
stances is that the central processing of
information from peripheral nerves is
altered so that fibres which are not 
normally nociceptive, generate impulses
which are interpreted as pain. Injury to 
a nerve (as in compression due to a 
prolapsed disc in the spine, inflamma-
tion due to arthritis or compromise to the
nerve’s blood supply) results in the 
generation of abnormal impulses. The
molecular constituents of the nerve dam
up at the sight of the injury making the
nerve hyper- excitable. Such damaged
nerves are able to generate their own
pattern of firing independent of the sen-
sory apparatus and are called “ectopic
pacemaker sites.” Cross excitation with

WADE BL, BSc Physiotherapy (Wits),
Hons BSc Psychology (Unisa),

MSc Psychology (Unisa)1;
Shantall HM, D Litt et Phil (Unisa)1

1
Department of Psychology, University of South Africa

This research was conducted in partial fulfilment of the requirements for a Master of Science degree in psychology at Unisa. 

10          SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1



SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1          11

other neurones occurs, so that other sen-
sations, such as light touch, are inter-
preted as pain. This is known as allodynia.
This sensitivity spreads to adjacent 
dermatomes, so that pain becomes
increasingly widespread (Shipton 1993;
Hawthorn and Redmond 1998). 

Psychological factors influence the
experience of pain. It is postulated that
when a person is ill or depressed the
background level of some neuropeptides
may be lowered, resulting in increased
susceptibility to pain. Kerns et al (1993)
suggest that learned inability to express
negative emotions such as anger 
may suppress the effect of opiods which
are produced by the body to moderate
the experience of pain. This may lead 
to reduced pain tolerance. Laughter and
joy may have the converse effect
(Charman 1989).

These findings indicate that acute and
chronic pain differ in important ways.  It
is sobering to note that, although some
patients learn to live with chronic pain 
in more appropriate ways, they seldom
return to the pre-pain state of function.
Linton (1987) noted that, even after
treatment, the final level of functioning
of patients with chronic back pain was
still clearly below that of their peers
without pain. Although some patients
may enjoy periods of remission during
the course of the condition, most people
with chronic health problems are con-
fronted with the possibility of incapa-
citation, rising costs, long-term medical
management, and the constant threat of
deterioration (Gregg et al 1989). This
may have an impact on a person’s self
concept, behaviour and well-being as
well as on the family and society. It is
essential for the physiotherapist to
understand the impact of chronic pain
on the life-world of the patient in order
to offer optimal rehabilitation and care. 

“Second to the common cold, back
pain is the most prevalent affliction of
man” (Hawthorn and Redmond 1998).
80 % of persons are likely to be affected
by back pain at sometime in their lives.
Bardin (2002) cites Taimela et al (1997)
suggesting that 35% of those with low
back pain develop a chronic problem   In
most cases, back pain resolves sponta-
neously. Although this seems to imply
that many patients will not need any

active intervention, this conclusion must
be tempered by the fact that the earlier
the intervention is received, the better
the prognosis. Once back pain has been
present for six weeks, it is likely to
become chronic. Once it has been there
for six months, there is only a 50%
chance of return to work (Hawthorn and
Redmond 1998).

Chronic pain can span an enormous
spectrum of intensity from mild dis-
comfort to agony. It is puzzling that
responses to pain, even within an indi-
vidual, may vary at different times and
under different circumstances. Pain may
take on a variety of meanings which
greatly influence the way in which it is
tolerated and perceived (Autton 1986).
The manner in which pain is interpreted
influences the intensity of the pain 
perceived as well as the outcome of
treatment interventions (Eales 1999).
The boundaries between the sensory and
emotional dimensions of pain are not
rigid, but fluid, functioning like parts of
a whole. Reducing either the physical
component or emotional component, 
has the capacity to reduce the whole
(Fernandez et al 1999).

The ability to tolerate pain is subject
to wide variation, as illustrated by the
way individuals are often able to tolerate
pain during culturally bound rituals. It
may appear that differences in pain
experience between different individuals
are due to different pain thresholds.
However, there is considerable evidence
that the threshold at which pain is 
perceived is remarkably constant across
ethnic groups (Bishop 1994). Melzack
and Wall (1982) conclude that differences
in pain tolerance amongst members of
various cultural groups are a reflection
of different ethnic attitudes towards pain.

It seems that the meaning and emo-
tional significance attributed to pain
may have changed, particularly in
Western cultures (Illich 1976).   Menges
(1984) states that “the Western world
has become increasingly sensitive to
pain, particularly in the last century.”
With advances in Western medicine,
people have become less tolerant of pain
and have great expectations of altering
it. Consequently, unrealistic expectations
regarding the potential for healing and
cure have emerged. Thus contemporary

Western society does not regard pain as
acceptable and it is viewed increasingly
as an abnormal and unnatural part of life
(Hilbert 1984). Waddell (1991) argues
that “chronic disability due to simple
backache is a relatively recent peculiarly
Western epidemic.”

Cultural differences of this kind indi-
cate that the meaning of experience to a
particular person, including the meaning
of illness and pain, will depend in part
upon the meaning assigned by the 
person’s social group. Cultural norms
determine whether the sick person will
be considered acceptable or disgusting,
whether they are to be pitied or cen-
sured, or whether he or she should be
isolated or not. Cultural definitions of
illness may be a source of suffering 
for the sick person. Such definitions 
frequently involve a value judgment.
Toombs (1992) observes that the suffer-
ing which accompanies disability is 
not solely the result of loss of function,
but includes the recognition by the
handicapped person of a devaluation 
in their status, which reflects cultural
values. Therefore, the degree of suffering
and meaning of pain are linked. 

There appears to be a widespread per-
ception amongst chronic pain sufferers
that no one understands chronic pain
like another sufferer. Interaction with
the health-care system on the part of
patients with chronic pain appears 
frequently to be unsatisfactory (Price
1996). Miscommunication between
patients and medical practitioners,
appears to be a real problem. 96% of
medical practitioners in urban areas and
83% of medical practitioners in rural
areas in South Africa who took part in 
a study conducted by Papaikonomou
(1991) “believe that there is a communi-
cation gap between medical practitioners
and their patients, where information is
not understood or is understood in a dif-
ferent way, by the medical practitioners
and patient.” Toombs (1992) examined
the way in which meaning is assigned 
to symptoms from the perspective of
patients and their physicians, drawing
from her own experience as a multiple
sclerosis patient, as well as phenomeno-
logy. She argues that the biomedical
model is an inadequate model for me-
dical care. She explains that, from the



12          SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1

phenomenological point of view, illness
is understood from different perspec-
tives by patients and medical practitio-
ners. The patient experiences illness in its
immediacy as the disruption of their life
world. This experience is a pre-theore-
tical one. In contrast, the physician
focuses on the disease process itself. In
this sense illness is regarded as a dys-
function in the biological body (rather
than a disruption of the lived body.) The
patient’s subjective report is re-inter-
preted in terms of the physician’s under-
standing of disease processes. This
involves an abstraction from the
patient’s pre-reflective experience to a
scientific account of the causal structure
of such experiencing. Although it may
appear that the patient and physician are
talking about the same reality, from a
phenomenological viewpoint these reali-
ties are distinct. She states that therapy
is less likely to be successful if the
meaning of illness to the patient is not
taken into account. Such meaning is not
apparent from clinical data alone, but
the lived experience represents the rea-
lity of the patient’s illness. Toombs
(1992) argues that distortions in commu-
nication can only be remedied once 
the differences on which they are based
are understood. Such differences with
respect to chronic pain in particular have
not been explored. However, provision
of a phenomenological description of
pain from the patient’s perspective could
provide the basis on which communica-
tion between patients and members of
the medical profession may be clarified. 

Aim and Rationale of this Study
The present study differs fundamentally
from conventional quantitative studies
in terms of its research objective, 
namely, to provide a holistic description
of the meaning of chronic pain. Bardin
(2002) has emphasized the importance
of evaluating the impact of chronic low
back pain on the patient’s life in order 
to develop relevant treatment outcome
measures, especially quality of life 
measures, because objective outcome
measures related to the biological com-
ponent bear only a weak relationship to
the patient’s behaviour and symptoms.
Prospectively planned outcomes need 
to be defined.  This implies that explo-

ratory studies have an important role 
in assessing the impact of chronic pain
on the life world of the individual.
Furthermore, the suggestion has been
made that successful management may
lie in changing the meaning of chronic
pain. “Personal constructs of this kind
are dynamic, ever-changing reflections
of the person’s adjustment to the envi-
ronment” (Large and Strong 1997). 

The phenomenological method used
in this research is a qualitative approach
which provides a means by which the
way reality as experienced by a particu-
lar person can be explored in a rigorous
fashion (Cleaver and Pallourious 1994;
Toombs 1992). The phenomenological
method has been chosen as the means by
which to study the meaning of chronic
pain because chronic pain is not “some-
thing,” which a person “has.” It is an
experience with which a person lives
and phenomenology provides a means
of exploring experience as it is lived.
The essential features of events and
occurrences as experienced by the indi-
vidual are described, in order to deter-
mine the essential character of the 
experienced phenomenon. This enables
the researcher to arrive at an “extended
description” of the core features of the
phenomenon of interest (Toombs 1992;
Giorgi 1983; 1992). In this way, the
essence of experience may be disclosed
(Giorgi 1997). 

Sampling and Selection of Research Participants
Three participants, all females, who had
experienced unrelieved, continuous
chronic low back pain for periods rang-
ing from eight to thirty nine years were
approached to take part in this study.
They were people who have no option
but to cope with pain. Subject selection
was purposive. Subjects were included
on the basis of certain criteria, namely:
they experience chronic pain, that is 
suffer from the condition, so as to be in
a position to describe it; they expressed
willingness to discuss the matter freely
and openly; they were capable of pro-
viding rich descriptions of their expe-
rience; they were naive with regard to
psychology to avoid the possibility of
their accounts being influenced by prior
theories or knowledge; subjects were
willing to commit sufficient time to the

interviews (Kruger 1979). Permission
was obtained to tape record interviews
and to publish results. Participants were
assured that their names would be
changed in the report, to preserve their
anonymity.

DATA COLLECTION
Data were obtained during open-ended
unstructured interviews. Unstructured
interviews were used in this investi-
gation to gather the data because the
phenomenological method requires that
the researcher should put aside all pre-
conceptions regarding the phenomenon
of interest, so as to observe it as it 
presents itself (Kruger, 1979). Imposing
a structure on the interviews would
interfere with this process. For the same
reason, no pilot study was conducted, so
as not to bias the researcher’s thinking
prior to commencing with the study. 

Each participant was asked the same
initial question, namely “Please describe
as fully as possible your experience of
chronic pain.” Participants were left free
to answer this question as they chose.
Leading questions, suggestive of parti-
cular answers were not asked, although
the researcher did ask for clarification or
further elaboration by the subject
(Barrell et al, 1987). The number and
duration of the interviews were self-
determining, continuing until the
researcher felt that a saturation point 
had been reached and that the participant
had explicated her experience fully.
Interviews were tape recorded and tran-
scribed. 

The Explication of the Data
The aim of the phenomenologist is to
understand a phenomenon, as fully as
possible, as it presents itself. The
method outlined by Kruger (1979) was
selected for the analysis of the protocols.
This included the following steps:

The first author bracketed all pre 
conceptions regarding chronic pain.
With its emphasis on a radical reflection
upon lived experience, the phenomeno-
logical approach requires a commitment
to setting aside or bracketing prior theo-
retical or common sense presuppositions
in order to focus on the phenomenon 
of interest as it presents itself. This
involves a radical disengagement or 



SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1          13

distancing from habitual ways of inter-
preting the world (Toombs 1992). 

The first author immersed herself in
the data, reading and re-reading the tran-
scripts and listening to the tapes in order
to gain a holistic view of the data.

Once a holistic intuitive grasp of the
data had been gained, the transcripts of
each participant were broken down 
into natural meaning units. Each natural
meaning unit is a statement made by the
subject which is self definable, and self
delimiting in expressing an aspect of 
the subject’s experience. These meaning
units were appraised by the second
author.

Thereafter, those meaning units
which were repeated were eliminated in
order to construct a first order profile.
This in turn was converted into a con-
stituent profile “which is a condensed
summary of the original data in the
words of the researcher containing the
essence of what the subject expressed”
(Shantall 1996). This process was
repeated on the constituent profile to
yield a second order profile. In the next
stage of the analysis, statements with
similar though not identical meaning
were gathered into categories which were
arranged in a hierarchical sequence,
describing the characteristics of chronic
pain.

The themes arising from this process
were used to write an “extended descrip-
tion,” from which the researcher could
gain an overall view of the experience of
chronic pain, capturing the core qualities
of the phenomenon.

RELIABILITY AND VALIDITY
The criteria by which reliability and
validity of a study such as this are
judged should be appropriate to quali-
tative research, which has a different
epistomological foundation to quantita-
tive methodology (Osborn and Smith,
1998). Such criteria have been detailed
by several authors (Stiles,1993; Osborn
and Smith, 1998). The reliability and
validity of this study are detailed else-
where (Wade, 2000).

RESULTS 
It is beyond the scope of an article such
as this to give a full transcript of each
participant’s experience. Therefore only

the main themes, as well as the extended
description, based on the interpretation
of the protocols are presented. 

Categories Disclosing the Characteristics of
Chronic Pain
Chronic pain is persistent, giving it a
quality that is particularly difficult to
endure.

Participants related that chronic pain
is a noxious stimulus which is there for
the rest of one’s lifetime and that it is the
relentless nature of the pain that makes 
it particularly difficult to endure. They
felt forced to cope or escape. The reali-
sation that chronic pain will not resolve
has forced them to regard death as the
only release from pain. Molly admitted:
I have at times, when the pain was 
really bad, actually prayed that God
would take my life.

Participants were able to understand
why some commit suicide, viewing their
peers who choose this option with trepi-
dation, knowing that for some, chronic
pain is so intolerable and inescapable,
that this option makes sense. Controlling
the level of pain which has to be endured
is critical in enabling sufferers to cope.
Joyce explained:

Well, if you are suicidal with pain like
that, and they tell you there’s nothing
wrong, nobody can help you, that there’s
no way out of the pain, you will find a
way. You will take a box of painkillers
and just end it all. I really feel that.

Participants indicated that the person
with chronic pain does not realise 
initially that the pain is permanent.
Expectations are such that the pain
“should get better”. In addition, the suf-
ferer is often confronted with a problem
that no visible signs can be found to
validate one’s complaint. The difficul-
ties encountered in proving the reality of
one’s pain makes one vulnerable to
judgement by others and may have long
term consequences. Molly’s recovery
from surgery did not fit a prescribed pat-
tern. She was particularly upset to find
that she was blamed for the failure of the
operation, although she had followed all
the instructions to the letter. As a result
of her poor recovery she was stigmatised
and told that “she wasn’t putting her all
into getting better.” She has suffered
from permanent iatrogenic hip pain as a

result of this incident. Participants
reported being labelled “mad or bad”,
creating a fear that one has an even
worse problem, namely a problem “in
the mind.” This problem was amply
illustrated by Joyce, whose doctor
refused to acknowledge the validity of
her complaint, causing her to lose a dis-
ability claim: You’ve got no power and
you’ve got no proof...What do you do?
He says to you “You’ve got no pain”
And you sit and look at him. Now you
think you’ve become a hypochondriac.
But, you realise “I have got pain!” -
”No, you haven’t - there’s nothing show-
ing up on this X-ray. Lady, do you want
to be sick or do you want to be better?”
“No, no I want to be better.” “Well then,
there’s nothing wrong with you!” 

In contrast to this, Molly related that
she desperately wanted to hear that she
was a hypochondriac. She desperately
wanted to escape from the pain. The
doctors acknowledged that she had a
genuine back problem and told her not
to come back, because there was nothing
they could do for her. She explained her
response as follows: I thought it would
be so much easier if I had a mental pro-
blem, because that was something I
could work on...But if it was a physical
problem, then the doctors were right and
there was nothing I could do.

Pain Takes Over Your Life
Participants compared the past and the
present, regarding the past as the way
they should be or wished to be, mourning
their loss. They felt forced to learn a
whole new way of life, in which pain is
the master. Participants described how
chronic pain leaves one feeling power-
less and victimized. Chronic pain seems
to take on a life and character of its own.
The affected body seems “separate”
from the person and may be personified.
Molly lamented: My back had taken
over my life. 

Participants related that the body no
longer obeys spontaneously and has to
be placed under conscious control. The
painful body seems to imprison one and
too much effort to escape may be
severely punished. One is forced to
function within pain’s constraints, which
is distressing. Molly described this 
tension as follows: I think this is what



14          SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1

makes pain so difficult - there’s
absolutely nothing wrong with your
brain. Your brain is still active, your
brain still wants to do things, your brain
still wants your body to do things. But
your body, because of the pain, just 
cannot work with your brain. And it is
very frustrating. Very, very frustrating.
You’ve actually got a little war going on
inside you.

Chronic Pain Causes Interpersonal Difficulties
Participants say that that admitting to
pain constantly is socially unacceptable.
They find themselves in a dilemma in
social relationships between genuine
openness and fear of rejection. How-
ever, one cannot relate to others free of
pain. Pain affects social roles. Sufferers
have to find a balance between the
restrictions imposed by pain, and the
demands of everyday life. One has to
learn to be vulnerable, and learn to
receive, and still enjoy life, in spite of
pain. Gerda explained how this dilemma
may be overcome: The thing is you 
have to come to a point basically, where
you are prepared to be vulnerable.
Vulnerability is something that, if you
want to build a relationship, is absolutely
vital, because you can’t build a relation-
ship without it.

Participants explained that, not only
is the sufferer vulnerable to judgement
by health professionals, but also by 
significant others. Chronic pain does not
make sense to relatives and friends who
believe it “should” be curable. Careless
comments are often hurtful. Gerda
reflected on this issue:

I had to learn to accept myself,
regardless of what everybody thinks or
says. That doesn’t mean to say I don’t take
notice of what they think. You know, one
can think you are cut off from people
and that you don’t allow people to affect
you by their thoughts and their manne-
risms, and by their approach to you, but
I don’t think there is anyone of us who is
able to withstand what others around us
say and do. We all think about it.

However, precisely because the pain
does not resolve, sufferers have a 
need for ongoing social support. Molly
acknowledges that it is difficult to admit
that she cannot cope by asking someone
to do something for her. She had to learn

to ask for help, which is difficult
because one is scared of rejection. Even
if you do ask for help you feel you are a
nuisance. However, she has learnt from
experience that there are friends around
her who are in fact only too willing to
help. Nevertheless, she tries by all
means to hide her pain whenever possi-
ble: If somebody asks me how I am, I
will never say “I’m in pain today.”
Never!...I just feel I am a weakened 
person if I admit to pain all the time. 

Molly feels that chronic pain has
destroyed her confidence in social inter-
actions: “I must be a pain to be
around.” Social gatherings, which were
once a source of pleasure, have become
a source of stress because “you don’t
want to dampen the day.” 

Support from health professionals,
family or friends, enabled participants 
to view the social world as a source of
comfort. When support is lacking, the
social world may be regarded as threat-
ening, causing the sufferer to retreat 
further and further from it despite a des-
perate need to be understood, as in the
case of Joyce, who hides her pain from
the family: I can’t say anything. Most
confusing. Most upsetting. I actually 
am very unhappy that they don’t know
because I put on this huge act. “Oh
come inside, sit down, how are you?
How about tea?” Nobody ever helps me.
I make the tea, put biscuits on the plate,
or cut the cake, carry this massive tray,
and everybody sits and chats, nobody
knows and they won’t know because I
don’t want them to know. 

Participants indicated that they are
sensitive about divulging their experi-
ence, knowing that the compassion of
non-pain sufferers is limited. Joyce
commented: People don’t click with
someone who is always complaining.

One is Alone
Although chronic pain impacts one’s
relationships, it is an experience in
which one is profoundly alone. No one
can take one’s place and participants
said they realise that no one else knows
what you are going through. People with
chronic pain may find solace in religion.
For Gerda, faith is the answer to the
problem. She sees God as one who is
able to share her experience, One who

can look at the full extent of what she is
going through without having to turn
His face away. She can turn to Him at
any time. In that, she finds comfort. She
emphasised the importance of her faith
continually, stating that psychology is
only of limited value in dealing with
chronic pain: You’re totally on your
own. Only a person that has gone
through pain will really understand, and
even then your pain differs, and your
understanding differs. I have learnt to
say I have empathy, I have an apprecia-
tion of (another’s pain) , but not to say
that I totally understand. No one will
totally understand what another is expe-
riencing from the point of view that
they’re not in your situation. They do not
have your psyche. They do not have your
emotions. They do not have your body.
They are totally unable to have a deep
comprehensive understanding. To say
you have a total understanding is a no,
no. It’s just not there, because we are all
so different.

Molly was upset that there is so little
help available to assist patients to deal
with pain. She was told by the doctor
that she was beyond help and must learn
to live with her pain. She felt betrayed
and abandoned: The neurosurgeons and
orthopaedic surgeons all sit back and say
“this has happened to you, now you’ve
got to learn to live with it.” They don’t
realise that 24 hours in the day is a long
time when you’ve got constant pain.

Chronic Pain Creates a Bleak Future
Participants in this study had all experi-
enced a deterioration in their condition
over the years. Medical interventions
had failed, destroying their hope that a
cure could be found. They longed to be
rid of the pain permanently and
acknowledged that the course of chronic
pain is uncertain and one’s current 
experience of pain, especially worsening
pain, provokes a profound fear of the
future, as described by Joyce: It is a
bleak future. When you sit and feel sorry
for yourself. It is a hell of a bleak
future...It is just one terrible thing to live
with. I just wish somebody could come
and take it away! But they are not going
to take it away. I have realised lately
that this is a permanent thing and I do
not know what to do about it... If I am



SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1          15

going to be in bed constantly and unable
to do anything, people are going to
switch off from me and just push off...So
maybe I’m scared of rejection...You
know that the thought of living with pain
for another 20 years is not a good thing.
It is scary. It is very, very scary.

Gerda seemed to sum up their experi-
ence when she stated I think the one
thing we all fear is helplessness. This
fear seems to be mediated by the wil-
lingness of others to provide support.
Most of all, the participants feared being
abandoned and losing their personal
worth. I like people to want me for who
I am. Not for what I need from them.
(Joyce)

These fears are so terrifying that 
participants said they prefer not to look
at the future. It is too much to bear all at
once. Efforts are made to live one day 
at a time, focusing on the good things
they have now. They reported a greater
appreciation of what they have.

Participants emphasised that it is vital
to retain hope, because losing hope may
lead to one being overwhelmed by pain
and even to suicide. These participants
expressed a belief in eternal life, which
they felt gave them hope. They stressed
the importance of knowing that the pain
will eventually end, emphasising that it
is the persistent nature of chronic pain
that sets it apart, making it particularly
hard to bear. Molly was very upset about
two members of a support group who
lost hope and committed suicide. She
explained this as follows: Some people
in the group lived for now. They didn’t
have an idea of eternity, that when this
life comes to an end there is another 
life. The pain became all engulfing
because they had nothing left. They had
absolutely nothing. All they had to look
forward to was daily pain...

Coping with Chronic Pain
Participants recognised that chronic pain
has forced them into a corner where 
one either has to escape from a life of
pain, or one has to cope. Accepting that
chronic pain is permanent was the first
step in learning to cope. Prior to this,
they had engaged in a search for relief
and cure, which eluded them. Molly
explained: At first I just fought it all the
time thinking that I wanted it cured.

Totally cured. And I came to the realiza-
tion that “Molly, no matter what you do,
it is done. It cannot be cured. And you’ve
now got to look for ways to help yourself
deal with it more...

But it is very hard in the beginning
when you’ve got constant pain. You
don’t actually realize that this is going to
go on and on and on. It takes a long
while for you to start realizing that 
there isn’t an op out there, there isn’t a
machine out there, there isn’t anything
out there that can help you.

Participants who had found practi-
tioners who are willing to support and
advise them maintained a positive atti-
tude towards the medical profession.
Failure to do so resulted in the patient
turning away from the profession to a
greater or lesser extent, expressing anger
at its failure to support and assist them. 

Participants emphasised the impor-
tance of reducing the level of pain by
means of medication, exercise, alterna-
tive medicine or physiotherapy. The
physiotherapist was perceived as the one
person who truly understood and vali-
dated the experience of these partici-
pants. Participants had worked out ways
of decreasing the level of pain, including
sensible use of medication. However
they expressed a prominent fear of
addiction. Gerda highlighted the impor-
tance of education and knowledge and
of the mind in dealing with pain: More
needs to be done for the patient to help
you understand why things are happen-
ing to your body, then you can cope with
it. Molly emphasised the importance of
breaking the chain of unbroken pain.
She was admitted to hospital periodically
and given strong medication to provide
a temporary respite from pain: Having
had that break enables you to cope...
when you just see this as a long road
ahead, that you’ve got this pain for
another 50 years, you think to yourself
“I just can’t cope.” You do panic. That is
what is frightening. 

The relief provided by physiotherapy,
however temporary was an important
factor in enabling participants to cope.

Coping with chronic pain is an ongo-
ing battle: You have to fight it daily. It is
not something that you have fought and
it’s over with... The day you stop and
think “the pain has got the better of me.

I am just going to do nothing,” the pain
has won. At times participants fight the
pain. At times they found it best to rest
or curtail activities, adapting to the pain.
Gerda stressed the importance of listen-
ing to the body: I’m having to learn to
say “no.” I am not a person that can
easily say no. I’ve got to listen to my
body’s needs...

Hobbies and interests provided an
invaluable respite from pain for these
participants. Gerda has developed a keen
interest in photography, Molly enjoys
arts and crafts and Joyce is studying:
Pain makes you sorry for yourself, which
is a bad thing. You get depressed, which
is bad. So you are totally self-centred
when you are in pain. So you have got to
get your mind off yourself, and on to
something else.

Participants make effective use of
“self-talk” to control pain. Another alter-
native is to distance oneself from pain.
Joyce achieves this by using humour.
Gerda is able to turn to her spiritual life.

Finding Meaning in Suffering
Participants found themselves engaged
in a struggle to find meaning in their
pain. Each one had questioned why it
happened. In the absence of any medical
explanation, they were forced to find
value in the pain itself, seeking an expla-
nation that transcends the physical
realm. They needed to find purpose in
the new way of life it imposes. Gerda
stressed that one needs to find a pur-
pose. If one doesn’t find a purpose, or
cannot see a purpose in one’s life, then
you’re going to get lost. You’re not going
to cope.

The distress of chronic pain seemed
to be mediated by the ability to find 
personal meaning in the situation.
Sufferers were able to cope when such
meaning could be found. Chronic pain
was viewed as a stimulus for personal
growth. Importantly, chronic pain was
viewed as increasing the qualities of
compassion, sensitivity, and wisdom.
Participants expressed satisfaction in
their ability to cope. They felt that they
are better equipped to assist others and
were less intimidated by suffering: The
pain has actually given me an assurance
that I can understand people because I
have been through it. I have travelled



16          SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1

that road. (Molly)
They wanted to help others to deal

with pain. Joyce was considering visiting
hospitals to support others, something
which she started to do at the close of
the research. 

Participants described how the reali-
sation that chronic pain is permanent has
forced them to think about the course of
life, revising their goals and priorities to
accommodate the changes imposed by
pain. The heart of the struggle to cope
seemed to lie in the sufferer’s ability to
lead a valued life in spite of the presence
of pain. Molly reflected on this process
as follows: It has created different
opportunities. Before I would not have
had the same empathy with somebody
with pain as I have now. I have learned,
as I have said, that I can go and visit
people who are sick, and it doesn’t 
bother me. Before, it would have got to
me. Work took up my time and I was not
able to do a lot of things. So my life has
changed. It’s like two different lives in 
a lifetime. It is like the life before pain
and the life after pain. They are very 
different. Very different. But I can say
now that I am content with life, and the
things I am able to do now. At first I was
not. I really battled. I battled tremen-
dously. But as I got more into it, and
more involved, I realised that it was just
as rewarding, as what I was doing before,
if not more so. I can do something else
now. It does not mean that everything
was taken away from me. My life is 
different, but I’m still useful.

The Extended Description 
Based on these findings, the first author
was able to write the following descrip-
tion, disclosing the core features of the
experience of chronic pain:

Chronic pain is an ongoing noxious
physical stimulus, which by its chronic
nature imposes a form of distress which
extends beyond the physical pain itself.
Sufferers feel alienated from the body
which no longer functions as it used to
and this is experienced as loss. The 
person feels isolated and trapped within
the painful body and is forced to function
within its constraints. This causes a shift
in social, occupational and family roles,
since the sufferer is unable to interact
free of pain.

The relentless nature of the problem
generates an ongoing need for support,
yet the sufferer is isolated in a private
experience which makes no sense to out-
siders, placing the person in a dilemma
between revealing one’s distress and 
the fear of rejection or stigmatization.
These contradictory demands for support
and discretion are experienced as stress-
ful. The course of chronic pain is unpre-
dictable and does not allow closure. The
persistent nature of the pain, coupled
with variations in intensity, provoke a
profound fear of the future, especially
the fear that one will become dependent
on others and thereby suffer a loss of
personal worth. Sufferers face the threat
that ultimately they will be overwhelmed
by pain and unable to cope.

Sufferers are forced into a situation
where it is imperative to gain a measure
of control over the pain, or find some
means of escape. Anxiety is reduced if the
person is able to control the intensity of
the pain or find some means of distancing
oneself from it. The distress of chronic
pain is mediated by the sufferer’s ability
to find a personal meaning in the expe-
rience itself, in the ability to re-interpret
its impact so as to be able to live a valued
life in spite of the presence of pain.

DISCUSSION AND RECOMMENDATIONS
The Value of Phenomenology in Health
Psychology
The primary focus of this research was
to provide a description of the expe-
rience of chronic pain from the position
of sufferers themselves. Smith (1996)
highlights the value of phenomenology
in health psychology. Using the pheno-
menological approach it was possible to
access the perspective of sufferers them-
selves and to focus on what is involved
in coping in a way which complements
existing studies. Chronic pain is expe-
rienced as a disruption of the lived body
which impacts the life-world of the 
person. Phenomenology permits access
to the lived experience of the pheno-
menon. People think about their bodies
and assign meaning to their experiences,
particularly in the absence of plausible
medical explanations for their condi-
tion (Smith 1996). Current literature has
been criticised for neglecting the lived
body in the search for meanings related

to chronic pain (Osborn and Smith
1998). 

Phenomenology provides a means by
which discrepancies in the understand-
ing of illness between individuals can 
be revealed. Toombs (1992) suggests
that there is a tendency towards mis-
communication between patients and
medical practitioners, because illness is
experienced by the patient in its imme-
diacy as a disruption of the lived body,
but that the understanding of physicians
is an abstraction, focusing on the disease
processes in the biological body. She
emphasises that these realities are dis-
tinct and that this is frequently a source
of misunderstanding between patients
and their doctors. Phenomenological
studies such as this one, provide a basis
on which the source of such confusion
can be clarified.

The themes which emerged in this
study reveal the struggles that patients
live through in their pain careers, sug-
gesting where patients’ needs lie and
where interventions could be focused.
The investigation showed that people
with chronic pain strive to understand
the nature of chronic pain, to assign
meaning to their experience and to
acquire coping strategies. The study
emphasises the multidimensional nature
of chronic pain, which implies that a
team approach to its management is
required. It also reveals the implications
for various role players involved with
the sufferer.

Implications for the Medical Profession
Medical Practitioners:
Participants’ accounts emphasise the
inadequate and often punitive nature of
the application of a purely biomedical
model to chronic pain. This model is
unable to supply either an explanation 
or cure and sufferers are frequently stig-
matized as a result. This implies that
many medical practitioners need to be
equipped to offer support and coun-
selling to patients. Focusing on the 
credibility of the patient’s complaint
strengthens the therapeutic alliance, but
failure to do so prompts frustration and
anger, deepening the patient’s distress.
When doctors were able to support and
listen to participants, this provided a 
valued form of therapy in itself.



SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1          17

Chronic pain can become unbearable,
yet patients are reluctant to use medica-
tion. There is a prominent fear of addic-
tion. The literature indicates that this 
is rare, since patients who take anal-
gesics purely for pain relief have been
shown not to develop the rapid physical
tolerance that is often a sign of addic-
tion. Indeed, unnecessary pain has been
described as a “tragedy” (Melzack 1990).
It seems that more can be done by 
doctors in terms of educating patients
about the correct and safe use of medi-
cation and alternative therapies. It is
important to note that the intensity of
pain seems to have a profound impact on
the person’s perception of their ability to
cope and therefore it is imperative to
assist the patient to reduce the level of
pain that must be endured.

The authority vested in the medical
profession as well as the confidence held
in diagnostic tests in terms of compen-
sation, treatment, disability payouts and
litigation seems to warrant further care-
ful investigation. Participants expressed
distress when their pain was initially
denied, based on diagnostic tests, only
to be confirmed later, when it was too
late to reverse legal and medical decisions
regarding their condition. One partici-
pant was not compensated financially,
because her complaint was not validated
until it was too late. Another participant
has endured persistent, iatrogenic hip
pain because her complaints were
ignored.  Such decisions may have long
term implications for the patient, which
influences the effect of chronic pain on
his or her life. The negative experiences
of these participants lend support for
further research into the development of
more comprehensive approaches to the
management and evaluation of people
with chronic low back pain, suggesting
that the biomedical model is inadequate
when applied to patients with chronic
pain (Walker et al 1999; Seers and
Friedli, 1996). 

Physiotherapists:
Physiotherapists are often doubtful as to
whether it is ethical to continue to treat
patients who do not recover for long
periods. Treatment outcomes are fre-
quently assessed by methods such as
clinical judgement, return to work and

test results. However, there has been a
change in emphasis recently and the
trend is towards taking the patient’s per-
ception of what is helpful into account
when evaluating treatment outcomes.
One of the major objectives of medical
care is to improve the patient’s quality of
life (Eales et al 2000). Participants in
this study emphasised that the relief of
pain, even for brief periods is beneficial
and enhances coping. They described
that it is the unbroken nature of chronic
pain that makes it so difficult to endure.
Therefore, the answer as to whether
patients with long term low back pain
should continue to receive pain-relieving
treatment is an unequivocal “yes.” This
finding underscores the importance of
taking patient’s assessment of pain,
function and quality of life into account
when assessing treatment outcomes, as
emphasised by Bardin (2002).

It was note-worthy that participants
viewed their physiotherapists as the 
person who understood their pain best and
as the person to whom they were able to
disclose their experience. This implies
that the physiotherapists provided both
physical relief and psychological support
and that the value of listening to the 
person should not be underestimated.   

Participants emphasise that they have
learnt to cope and could teach others.
They indicate that education with regard
to the factors and mechanisms which
exacerbate pain is valuable in learning to
adjust one’s lifestyle. Physiotherapists
are well equipped to provide such expla-
nations. Discussion groups or back
schools could be put to good use to
achieve this purpose.

Occupational Therapists: 
Participants used a combination of 
coping strategies, fighting the pain at
some times and adjusting their goals and
activities to accommodate the pain at
other times. This study highlights the
value of a combination of active coping
and accomodative coping. Participants
did not give up but learnt to find a 
balance between the constraints imposed
by pain and the need to engage in 
meaningful activities so as to retain a
sense of worth. Previous research has
indicated that patients who had at least
one active interest were better able to cope

with chronic pain (Walker et al 1990)
This suggests that occupational thera-

pists could play an important role in
assisting sufferers to establish suitable,
enjoyable hobbies and interests. This is
particularly important because partici-
pants indicated that they are able to gain
control over the pain by escaping into
their interests or distancing themselves
from pain. Psychologists and occupa-
tional therapists would be able to assist
patients to discover individual means by
which this may be achieved. 

Implications for Psychologists and
Counsellors 
Chronic pain isolates sufferers from
those around them. Participants often
preferred to retreat from social situations
rather than risk rejection or spoiling
social interactions. They felt vulnerable
to criticism. This poses the threat that
the person may be cut off from sources
of support. The chronic nature of this
type of pain generates a need for ongoing
support. More needs to be done in terms
of educating significant others about the
nature of chronic pain and the need for
empathetic understanding on an ongoing
basis. Families need to be assisted to
deal with the fact that chronic pain
imposes changes in one’s ability to fulfil
social roles as expected and it seems that
family counselling may facilitate such
understanding.

Strengths of the Present Study
One of the strengths of the study was
that participants were no longer seeking
a cure for their pain. They had learnt
various means of coping. Since partici-
pants had accepted their condition and
were focusing on coping, they were able
to provide valuable insights into the spe-
cific coping strategies adopted. Coping
strategies are cognitions or behaviour
intended to manage a specific stressor
such as chronic pain. Examples of 
coping strategies which may be adopted
include the use of coping self statements,
diverting attention, ignoring sensations,
re-interpreting pain sensations, increas-
ing behavioural activity or praying and
hoping. (Haythornthwaite et al 1998;
Jensen and Karoly 1991). Previous
research has been criticised for collaps-
ing coping strategies into categories,



18          SA JOURNAL OF PHYSIOTHERAPY 2003 VOL 59 NO 1

such as active and passive strategies,
which means that specific coping mea-
sures cannot be identified (Haythorn-
waite et al 1998). 

Schmitz et al (1996) postulated that
people orient their actions and strivings
towards the attainment of personal goals.
Individuals are proposed to evaluate
their life situation with respect to progress
towards these goals, or movements
away from them. Chronic pain is asso-
ciated with a perceived threat to goal
attainment. This circumstance may lead
to a discrepancy between an actual and
desired state. Such discrepancies trigger
coping processes to neutralise the threat
or minimise loss. In this model, two
modes of coping were distinguished,
namely, assimilative coping and accom-
modative coping. Assimilative coping 
is characterised by active attempts to
change the situation. Conversely, accom-
modative coping is directed towards a
revision of goals in accordance with 
perceived deficits and losses.  

Participants explained how they had
redefined their goals in order to accom-
modate the changes imposed by pain,
without giving up, emphasising the
value of accommodative coping, con-
firming previous research (Schmitz et al
1996). It has been suggested that there is
a gap between the expectations of health
professionals and sufferers themselves
with respect to coping with intractable
pain (Large and Strong 1997). Passive
coping strategies have been linked to
psychological distress and depression
(Snow-Turek et al 1996). Well-being
and activity level have been shown to be
related to patients’ beliefs in personal
control over pain and to the strategies
they use to control pain. Haythornthwaite
et al (1998) point out that ignoring pain
is frequently thought to be an adaptive
strategy, but, contrary to expectations,
this strategy may lead sufferers to expe-
rience increased pain together with a
sense of perceived loss of control over
the pain. This is particularly noticeable
when the pain is responsive to increased
activity. Health professionals tend to
favour active, offensive coping strate-
gies. In the current study, participants
revealed that both active and passive
coping strategies are needed, confirming
previous research that flexibility in the

use of coping measures is valuable
(Large and Strong 1997). This research
provides a basis on which such mis-
understandings can be overcome,
“putting the claim that active coping
strategies are superior to accommo-
dative processes in perspective”.

Recommendations for Further Research
There is a need to develop reliable 
criteria for assessing the outcome of
physiotherapy (and other treatments)
which take into account the patient’s
perspectives of improvement in quality
of life and well-being.

Participants in this study indicated
that chronic pain has stimulated psycho-
logical and spiritual growth. How can
this process be facilitated?

Participants emphasised the impor-
tance of hope in coping with chronic
pain. Where can such hope be found
when faced with an incurable condition?
The qualitative method employed in 
this research reveals the individuality
and particularity of a person’s coping
responses. The experience of chronic
pain may be translated into a spiritual
struggle and the meaning thereof may be
sought in the spiritual aspect of man
which requires further investigation by
methods which give access to this
dimension. 

Closing Reflections on this Study
Health professionals are faced with
complex issues when managing patients
with chronic pain. Talking to people
with chronic pain about what their pain
means to them seems to be invaluable in
enabling them to accept their condition
and to transcend it. Pain can reorganise
one’s life and change priorities and 
perspectives. Enabling sufferers to allow
chronic pain to have a positive impact
on themselves and their lives seems to
be a vital need and an extraordinary
challenge. 

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to the editor

must be addressed to:

Prof CJ Eales -

Editor SASP Journal,

School of

Therapeutic Sciences,

Faculty of Health Sciences,

7 York Road,

Parktown 2193

E-mail:

ealescj@therapy.wits.ac.za

garstanglm@therapy.wits.ac.za