allergic reactions to dental amalgam
asher0411
EMPIRICAL STUDY
Patients’ experiences of changes in health complaints before, during, and after removal of dental amalgam
THERESE T. SJURSEN, PhD student 1 , PER-EINAR BINDER, Professor
2 ,
GUNVOR B. LYGRE, Senior Researcher 3 , VIGDIS HELLAND, Senior Executive Officer
3 ,
KNUT DALEN, Dr Philos 4
& LARS BJÖRKMAN, Principal Researcher 1,3
1 Department of Clinical Dentistry, Faculty of Medicine and Dentistry, University of Bergen, Bergen, Norway,
2 Department of
Clinical Psychology, Faculty of Psychology, University of Bergen, Bergen, Norway, 3 Dental Biomaterials Adverse Reaction
Unit, Uni Research, Bergen, Norway, and 4 Department of Biological and Medical Psychology, Faculty of Psychology,
University of Bergen, Bergen, Norway
Abstract In this article, we explore how patients with health complaints attributed to dental amalgam experienced and gave meaning to changes in health complaints before, during, and after removal of all amalgam fillings. We conducted semistructured qualitative interviews with 12 participants from the treatment group in a Norwegian amalgam removal trial. Interviews took place within a couple months of the final follow-up 5 years after amalgam removal. Using the NVivo9 software, we conducted an explorative and reflective thematic analysis and identified the following themes: Something is not working: betrayed by the body, You are out there on your own, Not being sure of the importance of amalgam removal, The relief experienced after amalgam removal, and To accept, to give up, or to continue the search. We discuss the findings in the context of patients’ assigning meaning to illness experiences.
Key words: Health, health seeking, illness experiences, dental amalgam, assigning meaning, reflexivity, thematic analysis
Responsible Editor: Ptlene Minick, Georgia State University, United States. (Accepted: 25 May 2015; Published: 24 June 2015)
The meanings given to symptoms and distress can
transform suffering. Meaning*any meaning* serves to turn back the tide of chaos and
bafflement that confronts us in affliction. Given
specific meaning, illness becomes metaphor*a rhetorical resource to be used to explore and
communicate the wider significance of our
predicament. (Kirmayer, 1994, p. 183)
Patients suffering from health complaints which
cannot be fully explained by the doctors’ findings
might find it difficult to assign meaning to their
illness experiences (Kornelsen, Atkins, Brownell, &
Woollard, 2015; Madden & Sim, 2006). How can
they understand the experienced pain and discom-
fort when the biomedical ‘‘stamp of approval’’*a diagnosis*is apparently not within reach? How can they justify not being able to partake in activities as
they did previously when their suffering remains
unconfirmed by the medical system?
It is well known that mercury vapor released from
amalgam fillings can be inhaled and absorbed into the
bloodstream (Clarkson, Magos, & Myers, 2003).
Some patients fear their health complaints might be
caused or aggravated by mercury released from their
amalgam fillings (Sjursen et al., 2014; Tillberg et al.,
2005). Patients who attribute health complaints to
their dental amalgam fillings are a heterogeneous
group. Common to all of them is that they suffer from
unexplained or partially explained health complaints
that they believe are caused or aggravated by their
amalgam fillings. For some, only one or a few local
complaints such as taste disturbances, dry mouth,
and intraoral pain are attributed to the dental
amalgam. The majority describe a number of both
local and general health complaints involving several
organ systems. Tiredness, headaches, pain in muscles
and joints, and problems with memory and concen-
tration are among the most frequently reported
complaints (Langworth, Björkman, Elinder, Järup,
Correspondence: T. T. Sjursen, Department of Clinical Dentistry, Faculty of Medicine and Dentistry, University of Bergen, P.O. Box 7804, NO-5020 Bergen,
Norway. E-mail: [email protected]
International Journal of
Qualitative Studies on Health and Well-being �
# 2015 T. T. Sjursen et al. This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for any purpose, even commercially, provided the original work is properly cited and states its license.
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Citation: Int J Qualitative Stud Health Well-being 2015, 10: 28157 - http://dx.doi.org/10.3402/qhw.v10.28157
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& Savlin, 2002; Lygre, Gjerdet, & Björkman, 2005;
Vamnes, Lygre, Grönningsæter, & Gjerdet, 2004).
For some patients, contact allergic reactions might be
present, and removal of amalgam fillings in contact
with such lesions is generally recommended (Issa,
Brunton, Glenny, & Duxbury, 2004; Lygre, Gjerdet,
& Björkman, 2004). For the majority of patients with
health complaints attributed to dental amalgam, no
objective signs of adverse reactions can be observed
(Langworth et al., 2002; Vamnes et al., 2004). Never-
theless, one cannot preclude the possibility that
dental amalgam could have deleterious effects on
the health of highly susceptible people (Needleman,
2006; US Food and Drug Administration, 2009).
This poses the following dilemma: Even though there
is not sufficient evidence to lend scientific credibility
to an amalgam syndrome diagnosis, standard safety
margins are lacking, thus making it impossible to rule
out that, for some people, amalgam might be associ-
ated with a risk of negative health effects (Richardson
et al., 2011).
Studies investigating changes in general health
complaints after removal of amalgam fillings have
found reductions in health complaints (Lygre et al.,
2005; Melchart et al., 2008; Nerdrum et al., 2004;
Sjursen et al., 2011), but not to the levels found in the
general population (Lygre et al., 2005; Nerdrum
et al., 2004). The observed reductions in health com-
plaints might be interpreted as effects of patients
being seen and heard, improved dental conditions, the
natural variation in the course of the complaints,
reduced exposure to mercury, as well as placebo effect
and discontinued nocebo effect (Melchart et al.,
2008; Nerdrum et al., 2004; Sjursen et al., 2011).
Because of difficulties in masking whether patients
have their amalgam fillings removed or not, ran-
domized clinical trials of the effects of amalgam
removal are likely to be influenced by participants’
expectations.
In previous studies, patients’ experiences have
seldom been explored on their own terms. In a focus
group study from New Zealand (Jones, 2004) with
35 participants having amalgam-related complaints,
participants described experiencing psychological
problems such as memory loss and mood swings
that they believed were related to their amalgam
fillings. They also described experiencing psycholo-
gical problems, such as loss of social support and
considering suicide, that they related to suffering
from symptoms that were not easily diagnosed and
thereby often treated as indicating hypochondriac
tendencies. Of the participants who had removed all
amalgam fillings, the majority reported improved
health; some even to the extent of full recovery (Jones,
2004). In a Swedish interview study (Stahlnacke &
Soderfeldt, 2013) of persons who attribute health
problems to dental filling materials, mostly dental
amalgam, the participants described a variety of long-
lasting health problems that they believed were
caused by dental amalgam. Replacement of dental
materials was the main treatment for these prob-
lems, and the majority of the participants reported
having had good experiences with health professio-
nals, although some negative encounters were also
reported (Stahlnacke & Soderfeldt, 2013).
When patients suffer from health complaints that
cannot be easily explained, both patients and health
personnel find themselves in a situation where the
normal expectations of the medical encounter cannot
be met. To be better able to meet the patient where he
or she is, it is important that health personnel take the
time to learn more about how patients interpret and
give meaning to their health complaints. Patients
experience and give meaning to health complaints in
their everyday life, and it is therefore important to
know how the patients’ thoughts, obligations, past
experiences, and perceptions of the future interact
with the perceived pain and discomfort. Conse-
quently, for patients with health complaints attributed
to dental amalgam, it is not only necessary to bridge
the gap between the medical and dental aspects, it is
also necessary to bridge the gap between how the
complaints are understood in the physician’s/dentist’s
office and how they are understood and experienced
in the context of the patient’s everyday life.
In a previous article (Sjursen et al., 2014), we
explored how patients came to attribute their un-
explained health complaints to dental amalgam. In
this article, our aim is to explore how the same
patients experienced and gave meaning to changes in
health complaints before, during, and after amalgam
removal.
Method
Participants
Participants were recruited from the intervention
group in a Norwegian amalgam removal trial (Sjursen
et al., 2011). To be eligible for participation in the
intervention group of the trial, participants had to
fulfill the following criteria: initially referred to a
specialty unit for examination of health complaints
attributed to dental amalgam; no signs of contact
allergic reactions to dental amalgam and thereby not
recommended for removal of amalgam fillings; amal-
gam fillings still present; health complaints from
at least three organ systems; mercury level data avail-
able from initial examination; no allergy to resin-
based dental materials; no need for complicated
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Citation: Int J Qualitative Stud Health Well-being 2015, 10: 28157 - http://dx.doi.org/10.3402/qhw.v10.28157
dental therapy; and no severe medical disorders/food
allergies/psychological difficulties.
The 20 participants in the intervention group had
all their amalgam fillings replaced with other restora-
tive materials by their regular dentists. Amalgam
fillings were removed according to guidelines ensur-
ing minimal exposure from mercury (Dental Bioma-
terials Adverse Reaction Unit, 2002). The cost of the
amalgam removal was covered by project funds for the
amalgam removal trial. Follow-ups took place ap-
proximately 3 months and 1, 3, and 5 years after the
participants had completed the removal of all their
amalgam fillings. At the 5-year follow-up, 12 (seven
women and five men) of the participants were invited
to participate in qualitative research interviews. All
accepted, and interviews were scheduled accordingly.
At the time of the interviews, age range of the parti-
cipants was from 45 to 65 years (mean age 54.4 years).
After the completion of the 12 interviews, we were
able to identify both convergent and divergent experi-
ences in our data material. As we did not have the
impression that the last interviews brought to light
new themes, we decided to stop recruiting partici-
pants at this point.
Sampling method
We used a purposive sampling procedure to recruit
participants from the intervention group in an amal-
gam removal trial to explore how they experienced
and gave meaning to changes in health complaints
before, during, and after amalgam removal. By choos-
ing this sampling procedure, we were able to obtain a
homogenous sample with regard to all participants
having had their amalgam fillings removed. When it
came to the demographic characteristics, participants
were selected to ensure that a diverse age range and
both sexes were represented.
Researchers
The interview study was carried out as a cross-
disciplinary collaboration between three psycholo-
gists, two dentists, and one operating nurse. Together
we have varied clinical experience, as well as a diverse
experience with both qualitative and quantitative
research methods.
Data collection
To lay the basis for an open exploration of partici-
pants’ experiences of changes in health complaints
and how they assigned meaning to these, we chose to
carry out semistructured, exploratory, in-depth inter-
views. The first author, in close cooperation with the
fifth author, carried out all interviews. Neither had
been present at the follow-ups, and the interviews
were held at a different location than the follow-ups.
After each interview, the first and fifth author adjusted
the interview guide that had been initially developed
by all the authors. The interviews were videotaped.
Mean duration of the interviews was 60 min (range
32 min to 2 h 9 min).
Analysis
By reading and comparing the individual accounts,
we wanted to identify similarities and discrepancies
in the ways in which the participants experienced and
gave meaning to changes in health complaints before,
during, and after amalgam removal. We conducted an
explorative and reflexive thematic analysis (Binder,
Holgersen, & Moltu, 2012; Braun & Clarke, 2006),
which can be summarized as follows: (a) the first
author transcribed all interview recordings verbatim,
(b) to get a basic sense of patterns in the partici-
pants’ experiences, all authors read through the writ-
ten material separately, (c) to establish meaningful
themes, each author discussed the material with the
first author, (d) the first author organized the text
material, with the assistance of the NVivo9 software
(QSR International Pty Ltd., 2010), into ‘‘nodes’’ in
accordance with these themes, (e) in cooperation with
the coauthors, the themes were additionally refined
and condensed into the presented findings, and (f)
examples and quotes were selected to illustrate how
patients experienced and gave meaning to changes in
health complaints. To strengthen the transparency of
the analysis, we presented thick descriptions and used
quotes that exemplify the themes (Denzin, 2001;
Geertz, 1973; Ponterotto, 2006).
Ethical concerns
Participants received written and verbal information
about the interviews at the time of the 5-year follow-
up, and all included participants signed a consent
form. Before they entered the interview room, the
participants were reminded that the interviews were
going to be videotaped. The Regional Committee for
Medical and Health Research Ethics in Western
Norway, and the Norwegian Social Science Data
Services approved the study. To safeguard the
anonymity of participants, findings are presented
without identifying details.
Findings
In our analyses of how patients experienced and gave
meaning to changes in health complaints before,
Patients’ experiences of changes
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during, and after amalgam removal, we found the
following themes to be of importance:
a. Something is not working: betrayed by the
body.
b. You are out there on your own.
c. Not being sure of the importance of amalgam
removal.
d. The relief experienced after amalgam removal.
e. To accept, to give up, or to continue the
search.
Something is not working: betrayed by the body. The
starting point for all participants was the experience of
something not working inside their bodies. Some
had struggled with health complaints from an early
age, whereas others experienced onset of complaints
as adults. The majority of the participants described
the onset of complaints as gradual, but some pin-
pointed more distinct starting points for the health
complaints they attributed to dental amalgam. Sev-
eral of the participants already had*or went on to receive*other diagnoses explaining part of their complaints; nevertheless, they felt that something
remained unexplained. Participants’ complaints dif-
fered in kind, number, and intensity. The following
complaints were mentioned most often: pain in
muscles and joints, headaches, memory problems,
tiredness, gastrointestinal symptoms, and intraoral
health complaints. For some, the discomfort and
impairment were limited to a few distinct complaints;
for others, it was the sum of the complaints*more than the separate complaints in themselves*that posed the main burden. Some participants were
puzzled by the way the complaints made them feel
‘‘beside themselves’’ or ‘‘out of it.’’
I was in so much pain, and I also felt, for a
while, that I had such a poor memory (sighs).
I cannot say if that was because of stress caused
by having to fight the pain, but I did feel ‘‘out
of it’’ in a way. I really did.
Some described their bodies as being overly sensi-
tive to many different things to a degree that some
even felt betrayed by their bodies. They found it
necessary to avoid certain foodstuffs, such as wheat
and/or sugar, and some also developed respiratory
reactions and headaches from certain odors such as
perfume and paint. One participant described some of
her puzzling complaints and asked, ‘‘What causes it?
Why did it happen? Was it because of my strange
body? Who knows?’’ Another participant seemed
saddened that her body was not working as well as
others’ appeared to function. Because of her com-
plaints, she was only able to keep a part-time job, and
even then, she often felt exhausted and in pain after
work. Several described how the health complaints
had negative consequences for their social life. They
recounted the various ways the complaints and, in
particular, the depleted energy levels and nausea
caused by the pain limited their ability to keep up
with family life and professional obligations. They felt
they could not perform as well, or at least not as
effortlessly, as others seemed to be able to do. Despite
having families that gave them support and under-
standing, several described a profound feeling of
sadness related to not being able to be the spouse/
parent they wanted to be. Several also felt that their
relationship with friends and colleagues suffered
because of their complaints. They seldom had the
energy to meet people socially, and when in pain, they
had to pull themselves together to avoid responding
more harshly than they wanted to in tense situations.
All participants worked hard to ensure that they did
not lash out and hurt the people around them, and
most of the time they thought they succeeded with
this. This was very important to all of them, and the
occasional slip-up was not taken lightly.
If it only affected oneself, it would be more
than terrible, but it gets even worse if it hurts
others. And sometimes it ends up in a way that
one is not able to be the person one would like
to be.
It became important not only for them but also for
the significant people in their lives, to search for a
way to understand and hopefully cure the com-
plaints.
You are out there on your own. The majority of the
participants in our sample said that they had been
actively trying to find explanation for their com-
plaints. Several were disappointed by how little the
medical profession had to offer when it came to
health complaints in the absence of corresponding
objective findings.
I’m not quite able to sort it out, and the doctors
are not very good at helping with these things
when they do not find anything specific. . .. So in a way, you have to sort it out on your own.
In addition to seeking help from physicians and
dentists, participants also had consulted physiothera-
pists, chiropractors, and practitioners of alternative
medicine. For some participants, this had yielded
immediate and striking results, such as the case of one
participant, who consulted a healer because of a
locked temporomandibular joint.
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Then I saw a healer for the first time, and I
have never experienced anything so strange.
I mean, he didn’t even touch me, but it creaked
and groaned and after that, I have been able to
open my mouth wide.
A few of the participants who had consulted
practitioners of alternative medicine had developed
quite close relationships with some of them. In
addition to the treatment per se, it seemed that these
therapists filled an important role as emphatic listen-
ers and givers of advice relating to many aspects of the
participants’ lives. Other participants only sought
treatment when they needed help to manage specific
complaints. They tried to limit the number of treat-
ment sessions as these were described as expensive
and time consuming. There were also participants
who had spent a considerable amount of time, energy,
and money on treatments that were described as
having from minor effect to no effect at all.
Participants had also made other changes in their
lives, hoping to diminish their health complaints.
Several had tried different diets, sometimes through
trial-and-error, and other times on advice given at
rehabilitation centers or by practitioners of alternative
medicine. For most, the results were promising at
first, but the beneficial changes did not last over time.
Several participants, however, did continue to avoid
or limit the intake of certain food types as they
experienced this to be somewhat helpful. Most of
the participants had also modified their work situa-
tion. Some had started working reduced hours, some
had changed to jobs that were less physically taxing,
and some had started saying ‘‘no’’ more often at work.
One participant said that the questions the project’s
physician had asked her at the pretreatment examina-
tion led her to take a closer look at the way she was
living her life, and she had realized that she needed to
make more room for herself in her own life.
Participants varied as to how and when dental
amalgam was suspected to be a possible cause for their
body not working properly (Sjursen et al., 2014).
When they first contacted the specialty unit, there was
considerable media coverage of possible harmful
effects of dental amalgam, and all participants ac-
knowledged having heard about this possible connec-
tion through the media or through accounts from
friends and acquaintances. In addition, they had all
experienced something that made the link between
dental amalgam and health complaints seem person-
ally relevant. For some, dental amalgam ended up as
the only plausible explanation remaining after they
had tried everything else; for others, dental amalgam
was thought to be only one of many factors influen-
cing their health. Common to all participants was a
strong desire to have the amalgam removed once the
attribution of health complaints to dental amalgam
was made.
Not being sure of the importance of amalgam removal.
Participants said that they were very happy to be
given the opportunity to have all amalgam fillings
removed through participation in the clinical trial.
Several pointed out that they would otherwise not
have been able to afford such extensive dental
treatment. Many of the participants emphasized
that they had felt well taken care of both by their
dentist and by the personnel at the specialty unit
during follow-ups. To limit patients’ exposure to
mercury, a protective sheet (rubber dam) made from
silicone was used during amalgam removal. Several
of the participants said this made them feel well-
protected. A few patients had experienced illness
episodes after treatment sessions. Two of the pa-
tients who had experienced adverse reactions said
that they felt worse after treatment sessions when
the rubber dam had been difficult or impossible to
place.
When responding to the opening question: ‘‘Have
you experienced any changes in health complaints or
quality of life after the amalgam removal?’’ nine
participants said that they had experienced changes
for the better. One participant said she was unable to
answer this question because she had been in a very
demanding life situation at the time of the amalgam
removal. Two men answered no to this question.
They had both received other diagnoses and no
longer suspected that dental amalgam was the cause
of their complaints. The participants who had
experienced changes for the better were somewhat
hesitant when it came to identifying the amalgam
removal as a direct cause for the changes. After they
described the perceived changes in health com-
plaints, they usually tried to sort out which changes
they thought were caused by the amalgam removal
and which were more likely to have been brought on
by other changes in their lives.
Well, what I think is that I don’t really know
what (pause). I think that the amalgam removal
at least has had an effect on my mouth and the
pain I had there. But I (pause) when it comes
to the other complaints, I think that it is kind of
impossible to know if it is [the amalgam
removal] that has made me better or if it is
other things. I have tried a lot of different
things. I have had different treatments, and I
have changed my diet, you know, and I have
started to take Omega-3 supplements, which is
also supposed to be good for the joints, for
instance. So, I really have done other things as
Patients’ experiences of changes
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well, and I really can’t say if it is the teeth or if it
is the other things or if it is (pause). I find this
to be very difficult.
Participants thought that the new white fillings
were much nicer looking than the old black fillings,
and some of the participants said that they felt their
oral condition had greatly improved after the amal-
gam removal. Two participants reported that a taste
disturbance (metallic taste) had disappeared and
they were reasonably certain that this was because
the amalgam had been removed. One participant
had to replace several of the new fillings due to new
caries lesions. Participants found it easier to connect
reduced intraoral health complaints, such as reduced
pain and smarting in the gingiva, to the amalgam
removal, than to connect the more general health
complaints to the removal.
When it came to the general health complaints, all
participants were quick to point out that both the
initial complaints and the subsequent changes might
have been influenced by changes in life situation, work
conditions, and so forth. Several of the participants
used phrases like ‘‘but, of course, this could also have
been influenced by the stress caused by. . ..’’ They also emphasized that they had been trying several treat-
ment options both before and after the amalgam
removal, and several of the women pointed to
menopause as a possible explanation for reductions
of some health complaints. Some of the participants
had previously taken care of elderly parents, whereas
other participants had this responsibility at the time of
the interview. Some had gone through a divorce or a
painful breakup after the amalgam removal and said
that this had also influenced their health and general
well-being. At the time of the interview, several
participants were in demanding life situations that
negatively affected their health, and several described
how fluctuations of other medical conditions, both
previously known and recently diagnosed, made it
difficult to assess which changes were directly related
to the amalgam removal.
The relief experienced after amalgam removal. Despite
the uncertainties described in the last theme, the
majority of the participants concluded that they were
in a much better place in their lives at the time of the
interview than they had been before the amalgam
removal. With the exception of the two men who
said they had experienced no changes in health
complaints after amalgam removal, all participants
believed that the amalgam removal was partially
responsible for their feeling better.
This amalgam removal, I do believe it has had an
effect, together with all the other things. But I
would have to have psychic abilities to know
exactly how. As I have told you, there are still
periods in which I feel quite poorly and beside
myself, but I do feel much better now. I really do.
All participants, including the participant who had
experienced several new caries lesions after the
removal, seemed relieved that they no longer had
any amalgam fillings in their teeth. For many of the
participants, this relief appeared to be associated with
being able to cross a worry off a list.
Participant (P): Well, I was very relieved that I
could have them removed. . .. Because, at that time, I was very focused on what was causing
me to be not as healthy as others, and this was
something I wanted to try to (pause) that it
might help me get better. So it was certainly a
plus to get rid of it. At least I did not have those
anymore, and I had kind of excluded some-
thing (laughs). It was a little bit like that.
Interviewer (I): Yes, it felt good to
P: You know, some (pause). There are many
people with the same complaints that I have
had who are talking about amalgam and such.
So it is possible that if I still had those fillings
left, I could have been constantly thinking
‘‘Yes, it really could be those fillings keeping
me from feeling well.’’ But it is not like that
anymore, is it?
For almost all participants, there was a distinct
change in emotionality and tone when asked how they
would have felt if they still had one amalgam filling
left. All responded that they would have had it re-
moved and emphasized that they would not have
been happy at all. This stood in stark contrast to the
calm replies of some who had stated that they had
never been totally sure of the connection between
amalgam and health complaints to begin with, and
who conveyed in other parts of the interview a quite
sophisticated understanding of health as being multi-
factorially determined. This uncertainty related to
the importance of the amalgam removal stood almost
paradoxically in contrast to the absolute certainty,
even 5 years after removal, that it was important to
get rid of all amalgam fillings.
To accept, to give up, or to continue the search. Despite
feeling better, as reported by the majority of the
participants, none of them had become symptom-free
after the amalgam removal. They reacted to this in
different ways. For some, there seemed to be a change
in the urgency to seek answers. A few even thought
that they were moving toward accepting their health
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complaints, or at least toward accepting that their
complaints could never be fully explained.
Well, in a way I have accepted that I will always
have some complaints. I am not like I used to
be when I thought that if only I could find the
right solution, then I would also get cured. I
have kind of given up on that. It is more about
finding the best possible way to live with [the
complaints].
For some participants, this was associated with
growing older and accepting complaints as some-
thing to be expected with advancing age. For others,
the acceptance seemed to be more a consequence of
the limited success of previous attempts at finding
answers. The quest for an answer comes at a cost, as
reflected in the theme, ‘‘You are out there on your
own.’’ In addition to the time and energy spent, there
is also an emotional toll entailed in getting your
hopes up and then being disappointed repeatedly.
The process toward acceptance was described as
containing both elements of relief, in that they could
ease up on the search for an answer, and sadness at
having to let go of their hope for a cure. One
participant who suffered from daily pain and perso-
nal limitations caused by a diagnosed disease very
firmly stated that she preferred a growth perspective
to a pain-coping perspective. She did not want to
dwell on her pain and would much rather participate
in creative-outlet courses instead of pain manage-
ment courses. She had tried both of these and had
experienced that creative and artistic courses en-
hanced her quality of life to a much greater extent
than did pain management courses. For several of
the participants, the search for an answer continued.
Even some of the participants who talked about
accepting their health complaints kept the door open
for other explanations. There were also participants
who regarded the new filling materials with some
skepticism.
And now I just heard that they have started
talking about the new filling materials, the
white ones, you know. Because there are people
who react to those as well, you know.
I have almost nothing like that, because I
mostly have, uhm, porcelain crowns, you know.
That was a conscious choice I made at the
time. However, I have no idea what they used
to cement the crowns.
The not-knowing part of their health complaints
seems to have made acceptance and management of
the complaints difficult. The majority of the partici-
pants had other diagnoses, or went on to receive other
diagnoses, explaining part of their health complaints.
When describing the management of these com-
plaints, including potentially life-threatening adverse
reactions to prescribed medication, participants
seemed less emotionally engaged than when describ-
ing suffering from the complaints they could neither
explain nor knew how to treat.
Discussion
The opening phrase in the interviews was formulated
along the lines: ‘‘The main focus for this interview is
possible changes in health complaints and quality of
life after amalgam removal. However, we do know that
things in life are connected, so we are interested in the
big picture.’’ We thereby opened for a broad under-
standing of what was meant by ‘‘after amalgam
removal’’ because ‘‘after’’ could be understood either
as ‘‘in the period following’’ or as ‘‘caused by.’’ In their
answers, participants seemed to alternate between
these interpretations. When they became aware of
this, they tried to sort out what was reasonable to
connect with the dental amalgam and what might be
related to other things. Most participants stressed
how difficult these were to untangle and how it was
impossible to make strong claims. Through the
participants’ descriptions, a pattern emerged of
‘‘searching for an answer, trying out a solution, and
evaluating the effect.’’ The majority of the participants
described having been through similar circular pro-
cedures of searching for an answer, trying out a
solution, and evaluating the effect before the amalgam
removal, and some described having started on new
searches after the removal.
When drawing conclusions, one is always at risk of
accentuating some aspects of participants’ experi-
ences over others. In our interview material, the
energy and drive the participants put into their search
for a diagnosis and a cure really stand out. It could be
argued that this automatically follows from the
experienced discomfort; however, the participants
seemed to invest the same drive and energy in taking
care of their families and their work obligations. The
majority of the participants seemed to hold them-
selves to quite high standards and they expressed both
sadness and frustration over not being able simply to
‘‘pull themselves together.’’ Through these descrip-
tions, we were able to glimpse a sense of despair and
chaos; however, this was often quickly brushed aside
with a curt laugh, a joke, or a shift in focus.
According to Cassell (1982, p. 640), ‘‘suffering
occurs when an impending destruction of the person
is perceived; it continues until the threat of integra-
tion has passed or until the integrity of the person
can be restored in some other manner.’’ In more
general terms, Cassel defined suffering as ‘‘the state
of severe distress associated with events that threaten
Patients’ experiences of changes
Citation: Int J Qualitative Stud Health Well-being 2015, 10: 28157 - http://dx.doi.org/10.3402/qhw.v10.28157 7 (page number not for citation purpose)
the intactness of the person’’ (Cassell, 1982, p. 640).
Consequently, it is not only the pain and the health
complaints in and of themselves that are important,
but also the perceived implications these have for the
individual’s everyday life, hopes for the future, and
sense of self. In our interview material, the ‘‘threat to
the intactness of the person’’ seems mostly to have
been associated with participants’ being unable to
fulfill their obligations as employees and family
members.
Despite this complexity, we find that ‘‘pain’’ and
‘‘suffering’’ are often used interchangeably in every-
day language. This is not a trivial distinction and to
treat it as such can potentially lead to more suffering.
According to Loeser (2000), it is the suffering, and
not the pain, that motivates people to seek medical
care. Nevertheless, it is usually the pain, or the
health complaints, which are addressed by both the
patient and the physician. If patients seek relief for
their suffering, which they perhaps are not even able
to distinguish from their pain, and doctors are
trained to diagnose and treat pain and/or health
complaints, it is hardly surprising that patients with
unexplained health complaints often describe their
encounters with the medical profession as far from
satisfactory.
As argued by Kirmayer (1994, p. 183), suffering
can be transformed by the meanings given to the
experienced symptoms and distress. In continuation
of this, he says that to be effective*that is, ‘‘to carry private conviction and rhetorical force’’ (p. 184)*the illness meaning must be perceived as having some
sort of authority. Within a biomedical understanding
of illness and disease, authority is generally granted
through a diagnosis. As summarized by Jutel (2010,
p. 229), a ‘‘medical diagnosis explains, legitimizes,
and normalizes.’’ In the absence of a diagnosis, pa-
tients are denied an explanatory framework through
which they can understand, and potentially give
meaning to, their complaints. It should therefore not
come as a surprise that many patients consider a
diagnosis as a prerequisite for finding meaning and
restoring ‘‘the integrity of the person’’ (Cassell, 1982,
p. 640). For many patients, including our patient
group, a single diagnosis by which all complaints can
be explained cannot always be obtained. This leaves
the patients with more unknowns than answers: Where
are they supposed to direct their energy? Can they
trust that their complaints will stay more or less stable,
or do they have to anticipate getting worse? Should
their efforts be focused on adapting and coping, or
should they continue searching for an explanation and
a cure? How can they integrate their sense of self with
their (new) everyday life?
One thing that seemed to be of importance for
all our participants, with all their similarities and
differences, was the fact that they were all very happy
to have had all their amalgam fillings removed. They
were, however, unwilling to state unequivocally that
they had become better because of the amalgam
removal, and the majority seemed to lean toward the
hypothesis that amalgam removal played a part along
with all the other changes in their lives. Participants
sometimes during the interviews referred to more
simplistic convictions; these were, however, quickly
contrasted with more complex and open-ended
explanations. Different explanations seemed to be
accompanied by different levels of emotions and
rationales. Some of the most important aspects of
the amalgam controversy are perhaps found in the
difference between the rational understanding of
multifactorial explanations of health and the emo-
tional activation seen when a participant imagines
having one amalgam filling left. This underscores
how important it is that both researchers and health
personnel learn more about how patients think, act,
and feel regarding these questions.
Several of the participants in our sample seemed to
construe the amalgam removal as a prerequisite
enabling them to start the process of accepting their
health complaints. Without it, they feared they would
have continued to worry that their amalgam fillings
stood between them and good health. Nevertheless,
our participants were also quick to point out that for
most of their health complaints, they could not be
certain that these were causally linked to their
amalgam fillings. It is reasonable to assume that the
emotional side of the question ‘‘Are my amalgam
fillings making me ill?’’ is often left out of the medical
encounters, or perhaps it is only answered by referring
to statistics and probabilities. Even though health
personnel and researchers might find comfort in, and
take guidance from the evidence indicating that dental
amalgam is a safe treatment option at group level; the
same evidence, with its corresponding statistical and
clinical uncertainties, does not necessarily sound
equally convincing to the patients who are trying to
figure out whether it is true for their lives.
For some patients, it would perhaps be beneficial to
be able to address these issues based not only on
general probabilities but also on the direct conse-
quences the complaints and the uncertainties linked
to the dental amalgam have in their life. It is our strong
belief that taking the time to address this would be an
important step toward addressing not only the pain
but also the suffering and fear related to the pain. For
some patients, this could result in their being better
able to live with their health complaints and the
uncertainties related to the origin and prognosis of
the complaints. For other patients, the worry deriving
from their dental amalgam could potentially still have
a too negative impact on their quality of life.
T. T. Sjursen et al.
8 (page number not for citation purpose)
Citation: Int J Qualitative Stud Health Well-being 2015, 10: 28157 - http://dx.doi.org/10.3402/qhw.v10.28157
When considered in light of stories of successful
recoveries in the media, patients’ continued wish to
have their amalgam fillings removed does not appear
unreasonable. Several studies have reported that
patients experience improved health after amalgam
removal (Lygre et al., 2005; Melchart et al., 2008;
Nerdrum et al., 2004; Sjursen et al., 2011). This has
also been described in the qualitative studies per-
formed within this field (Jones, 2004; Stahlnacke &
Soderfeldt, 2013). It has been difficult, however, to
pinpoint the exact causes for the reported health
improvements, and the patients’ health complaints
have not been reduced to such an extent that they
have reached the levels of health complaints found in
the general population.
The fact that we do not fully understand the reason
for the reported improvements is perhaps most
disconcerting for the researchers and the health
professionals. For many patients, a subjective percep-
tion of reduced health complaints will have its own
value irrespective of the mechanisms involved. In
continuation of this, it could be argued that it should
be easier for patients to have all their amalgam fillings
removed. However, removal of dental amalgam
should never be considered a treatment if other
possible causes for the complaints have not yet been
ruled out (Norwegian Directorate of Health, 2008).
In addition, there will always be risks associated with
removing sound dental amalgam fillings. These risks
must be appropriately described by the dentist before
amalgam removal is initiated (Norwegian Directorate
of Health, 2008).
Reflexivity, scope, and limitations
The cross-disciplinary approach of this study enabled
us to look at the patients’ experiences from different
clinical angles; however, there is also a risk that our
clinical stance could overshadow the perspectives of
the patients. At the participants’ first examination at
the specialty unit, no objective findings (i.e., contact
allergic reactions) of adverse reactions to dental
amalgam were found, and it was not recommended
that the participants have their dental amalgam
removed. This also meant that they could not have
the cost of the amalgam removal covered by social
security. In the interviews, the participants expressed
a strong wish to have their fillings removed, but except
for making sure that defective fillings were replaced
with other materials than dental amalgam, no one had
initiated a full amalgam removal on their own. This
could be because they were relatively reassured by the
examination and the advice from the specialty unit, or
it could be because of lack of financial means. From
the interviews, we get the impression that both
explanations played a part. Therefore, we have to
assume that our participants were not among the most
strongly convinced anti-amalgam patients, and our
findings have to be interpreted accordingly.
When interpreting our findings, it is also important
to take into consideration that the participants had
taken part in a treatment study for which the aim was
to investigate the effects of amalgam removal, and that
they were told in advance that changes in health
complaints after amalgam removal would be the topic
in the interviews. To reduce the impact of links to the
clinical trial, interviews were carried out at a different
location than the follow-ups. Moreover, the inter-
viewer had not been part of the follow-ups. It soon
became clear that the interviewer was nevertheless
considered a member of the specialty unit.
The participants might also have reacted to subtle
cues from the interviewer, perhaps unintentionally
prompting multifactorial explanations at the expense
of other explanations. The fifth author, who listened
in on the interviews, had the impression that
different explanations were met with equal interest.
The participants, however, might have experienced
this differently. It is reasonable to assume that the
topic and context of the interviews might have
accentuated our finding that patients seemed to be
more worried about the health complaints that they
could not explain and which could potentially have
been caused by the dental amalgam, than by pain
and health complaints caused by other diagnosed
medical conditions.
Interviews were performed 5 years after removal of
dental amalgam. The explanations and descriptions
given in the interviews would have been different if the
interviews had taken place before or shortly after the
amalgam removal. However, the aim of the explora-
tion presented in this article was to learn more about
how participants experienced and gave meaning to
changes in health complaints before, during, and after
amalgam removal, and not to obtain an exact chron-
ological description of every experience. The stories
related by the participants are the stories they live
with, the stories through which they remember and
give meaning to their experiences.
Conclusion
If patients’ experiences 5 years after amalgam removal
can be summarized in a single sentence, the following
might be appropriate: ‘‘The dental amalgam was
certainly important to get rid of, but it is uncertain
how important the removal was for the experienced
changes in health complaints.’’ Patients were very
happy to have had all their amalgam fillings removed,
but they did not believe that they could credit all
the positive changes to the amalgam removal.
Nevertheless, several of the participants said that the
Patients’ experiences of changes
Citation: Int J Qualitative Stud Health Well-being 2015, 10: 28157 - http://dx.doi.org/10.3402/qhw.v10.28157 9 (page number not for citation purpose)
amalgam removal had been very important because it
meant that they could cross this particular worry off
the list. For some participants, this also meant that
they thought they might be moving toward a personal
acceptance of their health complaints.
Ethics and consent
The project was approved by Regional Committee
for Medical and Health Research Ethics in Western
Norway (REK III nos 24.01 and 2007/10173-ARS),
and the Norwegian Social Science Data Services
(NSD 19306).
Acknowledgements
We acknowledge Chief Engineer Dag Hammerborg
for his invaluable technical assistance in relation
to the recording, storing, and transcription of the
interviews.
Conflict of interest and funding
The authors declared no potential conflicts of
interest with respect to the research, authorship,
and/or publication of this article. The study was
supported by a project grant from the Meltzer
Research Fund, Bergen, Norway.
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