Professional Documents
Culture Documents
Annemiek Rollman, PT Aims: To assess possible differences between care seekers and
PhD Student non–care seekers with temporomandibular disorder (TMD)
Department of Oral Kinesiology pain complaints, by using semi-structured interviews. Methods:
Academic Centre for Dentistry Semi-structured interviews were held with 16 subjects who had
Amsterdam (ACTA) TMD- pain complaints: 8 care seekers and 8 non–care seekers,
Research Institute MOVE matched for age, sex, pain intensity, and fear of movement. Sub-
University of Amsterdam and jects were selected from a previously held survey study, with their
VU University Amsterdam
consent. The interviews were audiotaped, transcribed verbatim, and
Amsterdam, The Netherlands
analyzed according to qualitative content analysis. Results: From
Ronald C. Gorter, PhD the analysis, seven themes differentiating care seekers from non–care
Psychologist seekers were identified: catastrophizing, pain management, asser-
Department of Social Dentistry and tiveness, critical attitude towards health care, confidence in medical
Behavioral Sciences care, recognition, and adequate referral. Conclusion: Aspects upon
Academic Centre for Dentistry which care seekers differed from non–care seekers were mainly
Amsterdam (ACTA) person-related characteristics. Next to these characteristics, it ap-
University of Amsterdam and peared that inadequate referrals may play a role in care seeking. The
VU University Amsterdam, use of semi-structured interviews may further improve insights into
Amsterdam, The Netherlands processes that determine care seeking among people with TMD pain
complaints. J OROFAC PAIN 2013;27:227–234. doi: 10.11607/jop.1081
Corine M. Visscher, PT, PhD
Associate Professor
Department of Oral Kinesiology Key words: care seeking, health care practitioners, qualitative
Academic Centre for Dentistry research, semi-structured interviews, temporo-
Amsterdam (ACTA) disorder pain
Research Institute MOVE
P
University of Amsterdam and ain in the face or mouth is common, with a prevalence of ap-
VU University Amsterdam proximately 13% (range 1% to 48%).1 In the acute form, it
Amsterdam, The Netherlands most commonly has a dental origin. Chronic orofacial pain
is most commonly associated with a temporomandibular disorder
Machiel Naeije, PhD (TMD), but may also be associated with other less common disor-
Professor Emeritus
ders such as a trigeminal neuralgia.2,3 Even though pain is consid-
Department of Oral Kinesiology
Academic Centre for Dentistry
ered the major motivational factor for individuals to seek health
Amsterdam (ACTA) care, not all individuals experiencing pain attend a health care prac-
Research Institute MOVE titioner. It is estimated that only about half of the people who have
University of Amsterdam and TMD pain seek treatment.4,5 Better insight in people’s care-seeking
VU University Amsterdam behavior for pain can provide essential information for further im-
Amsterdam, The Netherlands provement in current treatment strategies, which is important es-
pecially for those patients who are at risk to develop chronic pain
Correspondence to: complaints.4
Dr C.M. Visscher In two recent studies on subjects with TMD pain complaints, a
Department of Oral Kinesiology wide range of physical, psychological, and social dimensions were
Academic Centre for Dentistry
measured in both non–care seekers and care seekers, explaining a
Amsterdam (ACTA)
Gustav Mahlerlaan 3004
variety of reasons for care seeking.6,7 It was shown that higher levels
1081 LA Amsterdam of pain intensity increased the probability of seeking care.6,7 Higher
The Netherlands levels of fear of jaw movement were also positively related to care
Email: c.visscher@acta.nl seeking.7 However, these items could only partly explain why some
subjects seek care while others do not, implicating that other, still
unknown aspects play an important role as well.
Since chronic TMD pain shares features with oth- results from the previous survey study7 had shown
er chronic musculoskeletal pain syndromes (such that pain intensity (as measured on a characteristic
as low back pain and neck pain), including modest pain intensity scale)16 and fear of jaw movements (as
associations between symptom severity and physi- measured with a fear-of-jaw-movement scale)7 are
cal findings, greater prevalence among women, and associated with care seeking, the non–care seekers
significant psychological distress,1,3,8–10 it is likely and care seekers were matched for pain intensity
that the reasons for care seeking in subjects with and fear of jaw movement. Additionally, the groups
TMD pain share similarities with the reasons for were matched for age and sex comparable to the
care seeking in subjects with other musculoskel- distribution in the previous survey study.7 The medi-
etal pain conditions. In the literature related to care cal ethical committee of the VU University of Am-
seeking for low back pain, it has been shown that sterdam approved the study (file number 2004/166).
especially physical symptoms (such as higher pain
intensity and physical disability) play a role in the Semi-structured Interviews
decision to seek care.11,12 However, individuals with
low physical disability or only mild pain also were In alternating rounds, care seekers and non–care
found to have visited a health care practitioner, in- seekers were interviewed in a nonclinical environ-
dicating that indeed other factors are involved in the ment: either at the participant’s home, at the Oral
decision to seek care as well.13 Kinesiology Department office, or in a quiet public
Both in low back pain and in TMD pain stud- location, depending on the participant’s preference.
ies, the common approach to study care-seeking Each participant was interviewed for about 30 to 60
behavior is to use surveys with closed-answer ques- minutes, and the interview was digitally audiotaped
tionnaires. Using semi-structured interviews invites (permission to record was given by the participant
people to speak freely about their personal pain in advance). The interviews were held by the princi-
history and may reveal yet unknown aspects that pal investigator (AR), who was trained to perform
explain why some people seek care while others semi-structured interview techniques as described
do not. Qualitative research designs such as semi- by Kvale.17
structured interviews are powerful in discovering The interviews were designed to enable people
perceptions of people that may remain unnoticed in to respond in an unrestricted way, allowing aspects
closed-answer questionnaire studies.14,15 Therefore, to be introduced by respondents and by the inter-
the aim of the present study was to assess possible viewer.18 The interviews had the following structure:
differences between care seekers and non–care seek- an introduction in which the principal investigator
ers with TMD pain complaints through the use of gave an explanation about the goal of the interview
semi-structured interviews. Subjects were selected and in which she asked the subject about his or her
from a previous survey study.7 TMD pain complaints (eg: “How is the pain at this
moment?”). After the participant was set at ease
and the goal of the interview was made clear, the
Materials and Methods principle investigator asked a transition question
(eg: “So, could you tell about what kind of care you
Subjects sought for this pain?”) to bring the conversation to
health care usage for TMD pain complaints. Subse-
The subjects were selected from a larger survey quently, when the participant talked about his/her
study in which 203 participants with a report of care-seeking behavior, the key question was asked:
TMD pain participated, among whom were both “Why did you (not) see a health care provider?”
non–care seekers and care seekers.7 Participants Subjects were encouraged to describe their motiva-
were considered to be “non–care seekers” when tions to (not) seek treatment in their own words;
they had never sought care for their pain complaint this was done through the use of open-ended ques-
and “care seekers” when they had visited at least tions by the interviewer. Furthermore, in each in-
one health care practitioner for TMD pain com- terview, the interviewer asked the participants how
plaints in the past. From that study, a sample (n = each of the following topics was of influence in their
16) of “non–care seekers” (n = 8) and “care seekers” care seeking:
(n = 8) was contacted by telephone by the principal
investigator (AR) to invite them for a semi-struc- • Pain, function limitation, limitations in daily life
tured interview and to give informed consent (sub- • Health care usage for other (pain) complaints
jects had given permission to be contacted for future • Experiences in health care usage (eg, impression
research in the initial survey questionnaire). Because of the expertise of the health care provider)
• Practical matters (taking time off, distance to Table 1 Description of the Participants with TMD Pain
health care provider, finances) Complaints
• Knowledge of possibilities for treatment Non–care Care seekers
• Social support Variable seekers (n = 8) (n = 8)
Age (y) 38.9 (15.8) 37.5 (13.0)
The authors chose these topics because, based on Sex (n)
the literature,6,11,12 it could be expected that they play Female 6 6
a role in care seeking. To be sure that the informa- Male 2 2
tion given by the participant was correctly and com- Pain intensity (0–100) 46. 3 (14.3) 49.4 (17.6)
pletely understood, the principal investigator ended Fear of jaw movements (n)
the interview with a summary, inviting the partici- 1 0 0
pant to correct or add information if necessary. 2 3 3
3 5 4
4 0 1
Saturation
Pain duration (n)
0–3 mo 0 0
The interviews of each round of matched care seek- ≥ 3 < 6 mo 1 1
ers and non–care seekers were analyzed, applying ≥ 6 mo < 1 y 0 0
the principles of the so-called constant comparative ≥1y<3y 4 4
method,19 whereby data collection and analysis oc- ≥ 3 y < 10 y 0 1
≥ 10 y 3 2
cur concurrently, allowing previous propositions to
be explored in subsequent interviews. This method Continuous variables are presented as mean values (standard
deviation); categorical variables are presented as frequencies.
was used, and data collection continued until no
new issues emerged from the interviews (and satu-
ration was achieved).19 After seven non–care seek-
ers and seven care seekers were interviewed, no new
information emerged. To be certain that saturation
was achieved, another non–care seeker and care to comment on the themes in two ways. First, they
seeker were interviewed (total n = 16). Again, no were asked to indicate whether the descriptions of
new information emerged. Two researchers (AR the themes were adequate reflections of their own
and RG) were involved in this part of the analysis. observations; if not, they were asked to adapt the
AR explored the issues, which were discussed and formulation in a way that would reflect their ob-
refined with RG. servations better. Second, they were asked to indi-
cate whether or not they agreed with the themes
Consensus that were found by other experts. After the second
round, all experts agreed to the themes, and consen-
The audio recordings of each interview were tran- sus was achieved.
scribed verbatim. Then five selected experts (one
with an MSc in Oral Public Health and with a dental
education background; one psychologist specialized Results
in social dentistry; two psychologists specialized
in dentist-patient communication; and a clinical As a result of the matching procedure, the eight
psychologist/psychotherapist) formed a panel and non–care seekers did not differ from the eight care
completed a consensus procedure, derived from a seekers with respect to age, sex, pain intensity, and
delphi-consensus method.20,21 In this procedure, fol- fear of jaw movements. In both groups, the non–
lowing a series of rounds, agreement in interpreta- care seekers and the care seekers, six women and
tion is achieved. In the first round, the experts were two men participated (Table 1). All participants
asked to individually read the interviews, with no who were invited for semi-structured interviews
knowledge of the opinion of the other experts, and agreed to participate and gave informed consent.
to denote differences between care seekers and Seven themes emerged that were considered to be
non–care seekers. Subsequently, the principal in- different between care seekers and non–care seek-
vestigator made an overview of these differences. ers (Table 2). Six themes concerned person-related
In this overview, shared and unique observations characteristics, and one theme was related to exter-
of the experts were categorized in a set of tentative nal circumstances. In the following section, these
themes. In round two, this overview was provided themes are more fully described. Citations, illustrat-
to each expert individually. The experts were invited ing the description, are noted in italics.
Table 2 Summary of the Themes Differentiating Care Seekers from Non–Care Seekers for TMD Pain Complaints
No. of experts that
found this theme
independently
Care seeker Non–care seeker (round 1)
Characteristics
Catastrophizing Interpret their pain as alarming Interpret their pain as not very alarming 5 out of 5
Pain management The health care provider holds the Want to find the solution myself 5 out of 5
solution; I will go and see a health care
practitioner, even if it costs me money or
time, because he or she can help me
Assertiveness Insist on health care provider’s help Do not want to bother health care 4 out of 5
practitioners with their complaints
Critical attitude Are critical and not easily satisfied about 4 out of 5
accessible care and persistent in —
searching for adequate care
Confidence in Have little confidence in proper treatment; 4 out of 5
medical care — Rather discuss complaints with friends in
a more empathic environment
Recognition Are happy to find fellow sufferers — 1 out of 5
Circumstances
Referral Adequate Not adequate 1 out of 5
to discuss my complaints.” [Interview 12]. On the Although it was the task of the panel of experts
other hand, non–care seekers did not want to bother to reveal differences between care seekers and non–
someone else with their complaints. They felt un- care seekers, while reading the interviews the pan-
comfortable when consulting a health care practi- el also stressed some similarities between the two
tioner. Non–care seekers tended to keep the pain to groups. These similarities were: all participants used
themselves and did not want to complain. To them the Internet for information; most participants ex-
it felt like they were exaggerating when consult- pressed dissatisfaction with the lack of time their
ing a health care professional for their complaints: general practitioner gave them; and all wished that
“That’s me, I don’t like to whine. I know they have the general practitioner would have been more di-
many patients that come for every little thing.” rective (or more quickly directive) in referring to a
[Interview 15]. health care provider.
Critical Attitude. Care seekers expressed criticism
and were not easily satisfied with accessible care:
“Alignment between the departments is missing.” Discussion
[Interview 2]. Or: “An adequate interview was miss-
ing, no good questions.” [Interview 11]. Moreover, The aim of this study was to assess possible differ-
as a result of being critical, they were persistent in ences between care seekers and non–care seekers
searching for adequate care. In contrast, non–care for TMD pain complaints through the use of semi-
seekers did not mention this topic. structured interviews. In a previous study, it was
Confidence in Medical Care. Non–care seek- shown that pain intensity and fear of movement are
ers reported little confidence in proper treatment, related to care seeking.7 This study indicated that
and instead discussed complaints with friends in a care seeking may also be associated with differences
more empathic environment. “To check if my com- in person-related characteristics: catastrophizing,
plaint is something serious, I use the Internet, talk pain management, assertiveness, critical attitude to-
to friends, but I do not go to my general practition- wards health care, confidence in medical care, and
er. I wish I could, but there is a lack of empathy.” recognition. Moreover, non–care seekers reported
[Interview 2]. In contrast, care seekers did not men- that they were not always adequately referred to
tion this topic. a health care provider. These results indicate that
Recognition. Care seekers were glad to get rec- semi-structured interviews may provide further in-
ognition from others for their suffering, and they sights into processes that determine care seeking
were relieved when they had found fellow sufferers. among persons with TMD pain complaints.
“I had such vague complaints; I did not have the In the present interview study, two methodologi-
idea that this could have to do with my jaws. But cal aspects may have influenced the results. First,
when I came into the waiting room, I saw another due to the small sample size, there is the risk that
guy rubbing his temples. Then I thought: I am not themes that differentiate care seekers from non–
the only one; I’m not some kind of nutcase. I am at care seekers were overlooked. To reduce this risk as
the right place.” [Interview 15]. much as possible, the constant comparative method
was used.19 In this method, the data collection and
External Circumstances data analysis occur concurrently, enabling the ex-
ploration of previous propositions in subsequent
Adequate Referral. Care seekers reported being ad- interviews. After seven pairs of non–care seekers
equately referred to a health care provider, although and care seekers, no new information came up.
often it took a long pathway to get this referral: Subsequently, an additional pair was interviewed,
“After mentioning my complaints to my dentist, it which also did not provide new information, sug-
still took at least half a year before she pointed out gesting that indeed saturation had been achieved.
this clinic to me . . . Before that, I never heard of this A second risk is that personal notions and expecta-
kind of care!” [Interview 12]. Non–care seekers, on tions of the experts analyzing the interviews may
the other hand, reported that, although the dentist have influenced the results (bias). Whereas most
was sometimes aware of their complaints, they were qualitative research studies used one or two experts
not referred to a health care provider: “My dentist to analyze the data,18,22,23 in this study the risk of
knows that it hurts when I open my mouth, and bias was minimized by using a Delphi-consensus
that I cannot open my mouth widely. He never said method with a panel of five experts.20,21 Four of
anything about it. Probably, I also never discussed them were psychologists, three of whom were also
it explicitly with him. He never suggested any treat- professionally active in dentistry, thus providing ex-
ment.” [Interview 5]. pertise in trained listening skills to an individual’s
story and familiarity with the impact of orofacial possible subjects have occasionally experienced dif-
problems. ficulties identifying themselves with the predefined
In the few qualitative research–design studies of phrasings, where the semi-structured interviews of-
care seeking in subjects with TMD pain complaints fered room for a personal choice of words. In this
performed to date,18,22,23 the motivations and ex- way, semi-structured interviews may have revealed
periences of care seekers only were investigated. A characteristics that were difficult to catch in fixed
unique aspect of the present study was that a group formats, such as closed-answer questionnaires.24 It
of non–care seekers in addition to care seekers was is encouraged that in the future, studies with a simi-
interviewed. Since non–care seekers did not report lar design are performed in new samples, both with
their complaints at a health care office, and there- regard to orofacial and other pain aspects (such as
fore are not registered, the recruitment of this con- low back pain), in order to see whether the same
trol group is difficult. The care seekers and non–care themes emerge.
seekers in the present study were selected from a In general, the interviews gave the impression that
larger survey study,7 in which about 100 people had care seekers are more focused on pain than non–
to be approached face-to-face at public places in or- care seekers. Care seekers appear more worried, and
der to find 1 non–care seeker with TMD pain com- more often look for solutions externally. Possibly a
plaints. Interestingly, the topics that were expected result of expecting solutions from others, they ap-
to play a role in care seeking, based upon the litera- pear assertive, are critical, and look for recognition.
ture, and discussed in each interview, did not fully This study separated the characteristics as different,
differentiate care seekers from non–care seekers in rather broad, concepts (pain management, asser-
the present study. By including a control group of tiveness, critical attitude, and recognition). Future
non–care seekers, better and more diverse insights studies could give insight into whether these charac-
into factors influencing care seeking were obtained teristics are a consequence of the subjects’ locus of
than when merely looking at care seekers. The fact control (internal or external).
that non–care seekers reported that because of an Interestingly, non–care seekers in contrast to care
inadequate referral they sometimes did not receive seekers appeared not so concerned about their pain,
treatment for their complaints, could only be found but most of them had chronic pain complaints. This
by interviewing non–care seekers. seems to be in disagreement with the fear-avoidance
To the best of the authors’ knowledge, stud- model by Vlaeyen and Linton, which suggests that
ies of care seeking in subjects with TMD pain4,6,7 catastrophizing is an important precursor of chron-
or low back pain11 that included non–care seekers ic pain.25 As a reaction to a painful injury, a vicious
as a control group always used the technique of circle of pain, catastrophizing, fear of movement,
closed-answer questionnaires. It is striking to see and disability is thought to lead to the development
that although several biopsychosocial factors were of a chronic pain condition.25 In favor of this theory
investigated, only the severity of the complaints is a recent clinical trial that showed the therapeutic
(pain intensity, pain duration, and disability) was efficacy of an early biopsychosocial intervention for
consistently found to be associated with the deci- patients with acute TMD who are at risk of devel-
sion to seek care.4,6,7,11 The present study was likely oping chronic TMD; it demonstrated that pain lev-
the first to have used the technique of semi-struc- els dropped significantly after the biopsychosocial
tured interviews, where participants were invited to intervention, as assessed at the 1-year follow-up.26
talk freely about their personal pain history, result- The present findings in the non–care seeking group
ing in them describing yet unknown aspects of care could just be an illustration that the fear-avoidance
seeking. The present interview study revealed that model is only applicable for patients, and not for
in addition to what has been found in questionnaire non–care seekers. Nevertheless, health care practi-
studies, person-related characteristics play a role in tioners should be aware that the care seekers who
care seeking. For example, the study revealed that visit them for TMD pain complaints are usually
care seekers seemed critical of and not easily sat- worried about the cause of their pain complaints.
isfied with accessible care, and were persistent in Therefore, reassurance should be a standard proce-
searching for adequate care, which was not found dure in counseling patients who suffer from a TMD
in the previous literature. This underlines the strong pain.
asset of in-depth interviews: They offer new infor- Even though non–care seekers are not so wor-
mation to what is already known from surveys. It is ried about their pain complaints, they might suffer
interesting to speculate on what exactly accounts for unnecessarily long. They keep trying to find a so-
the differences between the standardized answering lution on their own, while treatment options may
formats and a semi-structured interview format. It is be available. Since all participants in this study
16. Dworkin SF, LeResche L. Research diagnostic criteria for 24. Edmunds S, Brown G. Doing qualitative research in dentistry
temporomandibular disorders: Review, criteria, examina- and dental education. Eur J Dent Educ 2012;16:110–117.
tions and specifications, critique. J Craniomandib Disord 25. Vlaeyen JW, Linton SJ. Fear-avoidance and its consequences
1992;6:301–355. in chronic musculoskeletal pain: A state of the art. Pain 2000;
17. Kvale S (ed). InterViews: An Introduction to Qualtitative 85:317–332.
Research Interviewing. Thousand Oaks, CA: Sage, 1996. 26. Gatchel RJ, Stowell AW, Wildenstein L, Riggs R, Ellis E 3rd.
18. Durham J, Steele JG, Wassell RW, Exley C. Living with un- Efficacy of an early intervention for patients with acute tem-
certainty: Temporomandibular disorders. J Dent Res 2010; poromandibular disorder-related pain: A one-year outcome
89:827–830. study. J Am Dent Assoc 2006;137:339–347.
19. Glaser BG. The constant comparative method of qualitative 27. Fox S. Health information is a popular pursuit online. 2011.
analysis. Soc Probl 1965;12:436–445. http://www.sahs.uth.tmc.edu/evbernstam/HI6308_Materi-
20. Fink A, Kosecoff J, Chassin M, Brook RH. Consensus meth- als/PIP_Health_Report.pdf {Accessed 19 June 2013].
ods: Characteristics and guidelines for use. Am J Public 28. Fricton JR. Development of orofacial pain programs in den-
Health 1984;74:979–983. tal schools. J Orofac Pain 2002;16:191–197.
21. Jones J, Hunter D. Consensus methods for medical and health 29. Nilner M. Curriculum guidelines for orofacial pain and tem-
services research. BMJ 1995 Aug 5;311(7001):376–380. poromandibular disorders. European Academy of Cranio-
22. Durham J, Steele J, Moufti MA, Wassell R, Robinson P, Exley mandibular Disorders. Eur J Dent Educ 2001;5:136–138.
C. Temporomandibular disorder patients’ journey through 30. Lobbezoo F, van der Zaag J, Visscher CM, Naeije M. Oral
care. Community Dent Oral Epidemiol 2011;39:532–541. kinesiology. A new postgraduate programme in the Nether-
23. Wolf E, Birgerstam P, Nilner M, Petersson K. Nonspecific lands. J Oral Rehabil 2004;31:192–198.
chronic orofacial pain: Studying patient experiences and per-
spectives with a qualitative approach. J Orofac Pain 2008;
22:349–358.