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Why do People Avoid Medical Care? A Qualitative Study Using
National Data
Jennifer M. Taber, Ph.D., Bryan Leyva, B.A, and Alexander Persoskie, Ph.D.
National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.
BACKGROUND: Many studies have examined barriers to
health care utilization, with the majority conducted in the
context of specific populations and diseases. Less re-
search has focused on why people avoid seeking medical
care, even when they suspect they should go.
OBJECTIVE: The purpose of the study was to present a
comprehensive description and conceptual categorization
of reasons people avoid medical care.
DESIGN: Data were collected as part of the 2008 Health
Information National TrendsSurvey, a cross-sectional na-
tional survey.
PARTICIPANTS: Participant-generated reasons for avoid-
ing medical care were provided by 1,369 participants
(40% male; M
age
=48.9; 75.1% non-Hispanic white,
7.4% non-Hispanic black, 8.5% Hispanic or Latino/
a).
MAIN MEASURES: Participants first indicated their level
of agreement with three specific reasons for avoiding
medical care; these data are reported elsewhere. We
report responses to a follow-up question in which
participants identified other reasons they avoid seek-
ing medical care. Reasons were coded using a gener-
al inductive approach.
KEY RESULTS: Three main categories of reasons for
avoiding medical care were identified. First, over
one-third of participants (33.3% of 1,369) reported
unfavorable evaluations of seeking medical care,
such as factors related to physicians, health care
organizations, and affective concerns. Second, a sub-
set of participants reported low perceived need to
seek medical care (12.2%), often because they
expected their illness or symptoms to improve over
time (4.0%). Third, many participants reported tradi-
tional barriers to medical care (58.4%), such as high
cost (24.1%), no health insurance (8.3%), and time
constraints (15.6%). We developed a conceptual mod-
el of medical care avoidance based on these results.
CONCLUSIONS: Reasons for avoiding medical care were
nuanced and highly varied. Understanding why people do
not make it through the clinic door is critical to extending
the reach and effectiveness of patient care, and these data
point to new directions for research and strategies to re-
duce avoidance.
KEYWORDS: Medical care avoidance; Health care barriers; Health care
utilization; Qualitative.
J Gen Intern Med
DOI: 10.1007/s11606-014-3089-1
© Society of General Internal Medicine 2014
INTRODUCTION
People often avoid seeking medical care even when they
suspect it may be necessary;
1–4
nearly one-third of respond-
ents in a recent national United States (U.S.) survey reported
avoiding the doctor.
5–7
Even individuals with major health
problems
4,8,9
or who are experiencing symptoms
10–12
avoid
seeking medical care. For example, in one study, 17% of
patients diagnosed with rectal tumors reported that they waited
a year or more to seek medical consultation after noticing
symptoms, with some waiting up to five years.
12
Avoiding
medical care may result in late detection of disease, reduced
survival, and potentially preventable human suffering.
1,8,13,14
In the present study, we sought to understand why people
avoid seeking medical care. Avoidance of medical care has
been defined as “keeping away from something [in a medical
context] that is thought to cause mental or physical distress.”
8
Avoidance can also occur as a result of barriers, which can be
defined as factors that limit access to or ease of obtaining
quality health care (e.g., financial concerns, time con-
straints).
1,15
Avoidance of medical care can occur at any point
on the disease continuum, including preventing and detecting
asymptomatic disease, noticing symptoms and interpreting
their significance, seeking care after determining a potential
need, and complying with recommended treatment.
1,2,16
Of
note, the term “patient delay”has also been used to describe
phenomena related to avoidance, but guidelines for research
on early cancer diagnosis have suggested instead using the
more informative terms “appraisal interval”(the time taken to
interpret symptoms) and “help-seeking interval”(the time
taken to seek care after determining a need).
17
To date, research on avoidance of medical care has been
limited in the extent to which it examines the broad spectrum
of reasons for avoidance (but see
7
), often focusing on specific
factors such as barriers or psychological characteristics (e.g.,
lack of insurance, fear of a diagnosis).
4–6,15,18–24
A conceptual
review of reasons people avoid medical care identified only
six qualitative or mixed-methods studies assessing participant-
generated reasons, all of which used convenience samples
with predominately white participants.
1
Moreover, five of
the six studies reviewed assessed avoidance of specific
Received May 23, 2014
Revised September 24, 2014
Accepted October 20, 2014
procedures.
1
The exception was a focus group study among a
sample of Hispanics that explored reasons for avoiding med-
ical visits in response to warning signs of heart disease, cancer,
and diabetes.
11
This qualitative study identified factors such as
low trust in doctors, low perceived severity of symptoms,
emotional factors (e.g., denial, avoiding worry, embarrass-
ment), practical barriers, and prior negative experiences as
contributing to avoidance.
11
Given the significance and prevalence of medical care
avoidance in the U.S.,
1,5
there is a need for continued basic
qualitative research that can uncover the reasons underlying
this phenomenon. Simply put, why do people avoid medical
visits that could save lives or reduce suffering, whether
through early detection of disease or timely treatment? To help
answer this question, the present study used data collected
from a large national sample. The purpose of the study was to
identify the reasons people avoid seeking medical care and to
classify these reasons into conceptually distinct categories
reflecting underlying factors contributing to avoidance. Ulti-
mately, we sought to develop a model of medical care avoid-
ance that can inform efforts to promote care-seeking, help
providers reduce avoidance in their patient populations, and
promote theoretical advancement in this area of research.
METHODS
Data Source
Data were obtained from the National Cancer Institute’s2008
Health Information National Trends Survey (HINTS). This
cross-sectional survey collects data from a nationally repre-
sentative sample of civilian non-institutionalized adults aged
18 and over in order to assess trends and patterns in health
communication. Data were collected from January through
April 2008. Phone and mail surveys were administered to
maximize response rates (24.2 and 31.0 %, respectively).
The survey was completed by 7,674 participants. Details of
the study design have been published elsewhere.
25–27
Measures
Participants were first asked whether they “avoid visiting their
doctor even when they suspect they should.”Participants who
responded “yes”(n=2,327) were then asked to what extent they
endorsed three researcher-identified reasons for avoiding the
doctor (i.e., feeling uncomfortable when their body is being
examined, fear of having a serious illness, and because it makes
them think of dying); results concerning these items have been
published elsewhere.
5,7,18,24
Next, participants were asked
whether there were “any other reasons why you avoid seeing
your doctor,”and either wrote their response in a small box if
completing a mail survey or stated their response to an inter-
viewer, who summarized their response, if completing a phone
survey. Responses were brief and typically consisted of a short
phrase or sentence. Interpretable responses were provided by
1,369 participants (58.8% of those who reported avoidance in
response to the initial question). Eight participants provided
uninterpretable responses either because they failed to provide
a reason (e.g., “don’t know”) or because it was impossible to
determine the motivation (e.g., “ambivalence”or “family tradi-
tion”), with 164 participants listing more than one reason.
Data Management and Analytic Approach
An independent research company was contracted to preliminar-
ily clean the participant-generated responses (n=1,377; see 7 for a
report of these uncoded responses) by using short phrases to
standardize responses (e.g., “Busy”and “I’m too busy to go to
the doctor”were recoded into “Too busy”). A prior study reported
the top five of these uncoded responses (i.e., preference for self-
care or alternative care, dislike or distrust doctors, fear or dislike
of medical treatments, time, and money) and predictors of these
responses.
7
For the present study, the three study authors analyzed
these short phrases provided by the research company in con-
junction with participants’raw responses using a general induc-
tive data analysis approach, a method in which a theory or
conceptual model is developed through an iterative process of
coding, grouping codes into categories based on underlying con-
cepts, and forming a model or generating hypotheses based on the
data.
28,29
Coding was conducted by discussion of each participant
response among all three authors; in rare cases when two authors
disagreed, the third author acted as arbiter. Through this process,
the authors identified emergent codes and collapsed and re-
conceptualized existing codes as necessary. After assigning
codes, all authors participated in an iterative process of placing
codes into sub- and superordinate categories. The goal of the
coding and categorization was to identify conceptually distinct
factors underlying reasons for avoiding medical care, and to
organize these factors into a conceptual framework that could
provide targets for intervention and stimulate further research on
avoidance. Upon completing the coding and categorizing, we
reviewed existing theory on care-seeking and avoidance to deter-
mine whether our data provided support for a pre-existing theory
or whether we should develop a new theory and/or model. We
provide quantitative counts of the number of respondents, listing
each reason in order to convey the frequency of responses, and
qualitatively describe themes to provide context and explanation.
RESULTS
Among participants who indicated avoiding medical care,
characteristics of those who provided qualitative responses
(n=1,369) compared to those who did not (n=958) are shown
in Table 1. Participants who provided responses were more
likely to be white, female, younger, married, born in the U.S.,
to have completed the survey by phone, and to have higher
income and education, but were less likely to have health
insurance. Of the 1,369 participants who provided interpret-
able “other”responses, fewer than half (43.5%, n=595) en-
dorsed at least one researcher-identified reason (answered
Taber et al.: Why do people avoid medical care? JGIM
"agree/strongly agree" versus "disagree/strongly disagree") for
avoiding medical care. Approximately one-fourth reported
avoiding medical care because of feeling uncomfortable
(26.8%, n=369) or fearing a serious illness (26.4%, n=363),
with substantially fewer reporting avoiding medical care be-
cause it made them think of dying (8.2%, n=113).
From the analysis of participant-generated qualitative rea-
sons for avoiding the doctor, we identified three overarching,
conceptually distinct categories of reasons for avoiding med-
ical care based on whether participants perceived seeking
medical care to be necessary, available to them as a course of
action, and favorable or beneficial. In the first category, "low
perceived need to seek medical care," responses indicated a
determination that seeking medical care was unnecessary. In
the second category, "traditional barriers to medical care,"
responses indicated that seeking medical care was not an
option because of a lack of resources. In the third category,
"unfavorable evaluations of seeking medical care," people
evaluated some aspect of the care-seeking process as negative.
A fourth category, labeled “personality traits,”was also iden-
tified as a reason for avoidance that did not fall into any of the
three major categories. Each category and relevant subcatego-
ries are described in detail below and outlined in Fig. 1.
Low Perceived Need to Seek Medical Care
Many responses, coded as “low perceived need,”indicated the
belief that seeking medical care was unnecessary (n=167). The
most common reasons were that medical problems would
either “improve over time”or “improve on their own”
(n=55; e.g., “Whatever the symptoms, time will make it bet-
ter”;“I believe the body will heal itself in most cases”).
Participants often indicated that this was contingent on the
problem not being very serious (e.g., “What I have will pass. I
only go if I think it is serious”), with many stating not being
“sick enough”as a reason for avoiding medical care (n=40;
Table 1 Characteristics of Participants Who Reported Avoiding the Doctor and Either Did or Did Not Provide an Interpretable Qualitative
“Other”Reason for Avoidance
Provided qualitative “other”reason χ2value, pvalue
Ye s ( n=1,369) No (n=958)
n(%) n(%)
Age 48.9 (14.9)
*
52.7 (17.8)
*
t(2301)=5.63, p<0.001
†
Gender χ2(1)=5.49, p=0.02
Male 547 (40.0) 429 (45.8)
Female 822 (60.0) 528 (55.1)
Marital status χ2(1)=4.95, p=0.03
Married or living as married 781 (57.1) 496 (44.8)
Not married 555 (40.5) 427 (44.6)
Education χ2(3)=96.84, p<0.001
Less than high school 115 (8.4) 165 (8.3)
High school graduate 302 (22.1) 299 (31.2)
Some college 442 (32.3) 254 (26.5)
College graduate 478 (34.9) 204 (21.3)
Household income χ2(5)=37.41, p<0.001
$0 to $9,999 76 (5.6) 75 (7.8)
$10,000 to $19,999 139 (10.2) 135 (14.1)
$20,000 to $49,999 362 (26.4) 284 (29.7)
$50,000 to $74,999 242 (17.7) 132 (13.8)
$75,000 to $99,999 154 (11.3) 85 (8.9)
$100,000 or more 224 (16.4) 98 (10.2)
Race/ethnicity χ2(6)=40.56, p<0.001
Hispanic or Latino 116 (8.5) 115 (12.0)
White 1028 (75.1) 597 (62.3)
Black or African American 101 (7.4) 113 (11.8)
American Indian or Alaska Native 12 (0.9) 12 (1.3)
Asian 28 (2.0) 34 (3.6)
Native Hawaiian or other Pacific lslander 3 (0.2) 5 (0.5)
Biracial 27 (2.0) 26 (2.7)
Nativity χ2(1)=8.53, p=0.003
Born in the United States 1206 (88.1) 795 (83.0)
Not born in the United States 131 (9.6) 127 (13.3)
Health insurance status χ2(1)=15.72, p<0.001
Yes 1073 (78.4) 805 (84.0)
No 281 (20.5) 134 (14.0)
Personal history of cancer χ2(1)=4.77, p=0.03
Yes 114 (8.3) 104 (10.9)
No 1227 (89.6) 820 (85.6)
Survey response mode χ2(1)=38.92, p<0.001
Mail 642 (46.9) 575 (60.0)
Telephone 727 (53.1) 383 (40.0)
Note: Percentages do not sum to 100 because of missing data
*
Variable is continuous and values indicate mean (standard deviation)
†
Test of comparison is t test
Taber et al.: Why do people avoid medical care?JGIM
e.g., “Don’t go unless there is a real need”). Despite the
question stem referring to avoiding the doctor “when you
think you should go,”many participants said they avoided
medical care because they did not have health problems
(n=40; e.g., “Not sick. If not brokendon’tfix”). A small subset
of participants also reported avoiding medical care because
they “try to take care of themselves”(n=13; e.g., by using
over-the-counter medication), were either a doctor or worked
in a health care setting (n=9), were afraid to be labeled a
hypochondriac (n=5), or preferred to rely on spiritual healing
(n=3) or to use natural remedies (n=2).
Traditional Barriers to Medical Care
The largest overarching category of reasons for avoidance of
medical care may be best described as “traditional barriers to
medical care”(n=800, 58.4%). In this category, we included
responses indicating circumstances or obstacles limiting ac-
cess to medical care. Participants reported having too little
time or being too busy to seek medical care (n=214), that clinic
hours were inconvenient (n=57; e.g., “Have to take time off
from work”), that transportation was difficult (n=18) or the
distance was too far (n=7), that they were too sick to travel to
the doctor’soffice(n=6), or that an existing physical (n=5;
e.g., multiple sclerosis) or mental health (e.g., depression,
severe anxiety) problem prevented them from going. Financial
reasons included concerns about overall cost (n=330), co-pays
(n=35), and health insurance (n=151). Few reported not hav-
ing a doctor (n=13), that their doctor was inaccessible (n=5;
e.g., “I don’t see him, I just see nurses, he is never there”), not
having childcare (n=3), or language barriers (n=2).
Unfavorable Evaluations of Seeking Medical
Care
Approximately one-third of participants (n=456, 33.3%) pro-
vided responses that demonstrated unfavorable evaluations of
the process or outcomes of seeking medical care.
Physician Factors. The most frequently reported reasons for
unfavorable evaluations were factors related to physicians
(n=178). There were two major categories of physician
factors: interpersonal concerns (n=98) and concerns about
the quality of medical care (n=81). The most frequent
interpersonal concerns involved communication concerns
(n=34), including perceptions that doctors do not follow-up,
that communication is difficult, disliking how doctors
communicate (e.g., “Doctors often make you feel like you’re
stupid”), disliking the manner in which doctors provide advice
or recommendations (e.g., “Tired of being chewed out for not
following medical advice”), perceiving that doctors do not
listen to patients (e.g., “They are impersonal—paying more
attention to computers”;“My experience is one of not being
heard/considered”), and perceiving that doctors do not take
patients’concerns seriously. Other interpersonal reasons
Figure 1 Participant-generated reasons for avoiding medical care (n=1,369).
Taber et al.: Why do people avoid medical care? JGIM
included general mistrust of doctors (e.g. “I just don’ttrust
them”;n=25), believing that doctors do not care about patients
(e.g., “Idon’t always feel that they truly care”;n=8), and
perceiving that doctors are too busy (n=8). Participants also
reported a broad dislike of doctors, without elaboration
(n=21).
The most frequent reason concerning the quality of medical
care was that participants had low confidence in doctors’
expertise (n=61), which included beliefs that doctors would
not be able to diagnose patients (e.g., “Fear that they won’t
know what’s wrong either”), that doctors would provide in-
correct diagnoses (e.g., “They usually make the wrong diag-
nosis”), and that doctors simply “make things worse.”This
category also included more general statements about a lack of
confidence in medical providers (e.g., “No confidence in
today’s medical field”). Participants also expressed concerns
that doctors would prescribe unnecessary tests or medication
(n=13), and several participants stated that “doctors care more
about money than patients”(n=9).
Organizational Factors. Many reasons for unfavorable
evaluations concerned aspects of the medical system
(n=108), such as long waiting times (n=52) and “hassle”
(n=51), which included the hassle of making timely
appointments (e.g., “Usually can’t see doctor at the time of a
problem”) or even making appointments at all (e.g., “Difficult
to get appointment, office too busy”), as well as general hassle
(e.g., “It’s a big bother”). Several participants reported not
wanting to be around sick people (n=6). Additional reasons
are shown in Fig. 1.
Affective Concerns. Some participants reported that anticipated
fear, embarrassment, or guilt kept them from seeking medical
care (n=76). Responses concerning fear included the fear of
receiving bad news (n=31) such as a medical diagnosis or a
prognosis concerning an already diagnosed condition (e.g.,
“Afraid they might say my diabetes is worse”). Participants
also reported fear of needles (n=7), pain (n=5), and specific
procedures such as surgery or prostate exams (n=5), or simply
reported “fear”(n=12). Relatedly, participants reported the
specific emotion of embarrassment (n=15), including
embarrassment about weight (n=4), health issues (n=2), or
general feelings of discomfort (n=9). Finally, some
participants reported feeling guilty about potentially disclosing
engagement in unhealthy behavior (n=2).
Expected Negative Outcomes. Some responses pertained to
beliefs that the outcome of seeking medical care would be
negative, including dislike of a provider’smedical
recommendations or the perception that recommendations
would not be useful (n=42). These responses included
avoidance of specific recommendations to change behavior
(n=19); participantsoften disliked the emphasis on weight loss
(n=10; e.g., “Hearing the same old—lose weight”and
“Always have to hear about how fat I am”) or other health
problems such as alcohol consumption, smoking, or high
blood pressure. Some participants indicated they disliked or
could not take medication (n=12; e.g., “I hate Rx drugs—the
side effects scare me”) or that they would not follow a
physician’s recommendations (n=7). Additional responses
are reported in Fig. 1.
Figure 2 Conceptual model of medical care avoidance.
Taber et al.: Why do people avoid medical care?JGIM
Other Reasons. Several additional reasons were reported that
were either nonspecific or did not fall into another category
(n=67). The majority of these responses included generally not
liking or wanting to go to the doctor (n=46). Participants also
reported having had past negative experiences but not
specifying the nature of these experiences (n=11), denial
(n=4), and not viewing seeking medical care as a priority
(n=3). Fig. 1presents other reasons reported by few
participants.
Self-Ascribed Personality Traits
A fourth category of reasons for avoiding medical care
concerned personality traits (n=45). Specifically, participants
responded that they were “lazy”(n=23) or that they “procras-
tinate”(n=20), with little elaboration. Two additional
responses are shown in Fig. 1.
ConceptualModelofMedicalCare
Avoidance
Fig. 2presents the conceptual model of medical care avoidance
that emerged from our categorization of participant-generated
reasons. The language used to describe this model, as well as the
conceptualization of avoidance at different stages of the care-
seeking process, was influenced by Crisis Decision Theory,
which describes how people respond to negative events more
generally.
30
Our conceptual model proposes that avoidance may
begin prior to noticing a need (e.g., avoidance of early detection
or preventive services) or in the process of evaluating symptoms,
or that avoidance can occur after a need is identified if people
perceive a lack of resources, evaluate medical care unfavorably,
or have a personality trait that discourages care-seeking. The
model also proposes that avoiding medical care for any of these
reasons would lead to a lack of medical and preventive care and,
ultimately, poorer health outcomes. A specific comparison of our
model of medical care avoidance to the more general Crisis
Decision Theory
30
is presented in the Discussion.
DISCUSSION
This study presents the first comprehensive qualitative analysis
of reasons for avoiding medical care among the general U.S.
public. Using a diverse nationally representative sample and
participant-generated responses, we applied inductive qualitative
research methods to identify and categorize reasons for and to
develop a conceptual model of medical care avoidance. Three
overarching categories of reasons emerged based on the neces-
sity, availability, and desirability of care-seeking: 1) low per-
ceived need to seek medical care; 2) traditional barriers to
medical care, in which people may want to seek care but are
limited in their ability to do so; and 3) unfavorable evaluations of
seeking medical care, in which people may perceive care-
seeking as necessary and an available option, but not desirable.
Notably, unlike much of the prior research, the reasons identified
here are applicable across a broad range of clinical settings and
are particularly relevant for primary care. Primary care settings
are patients’first point of contact for most health issues, and
increasingly function as the hub of all medical care.
31
Under-
standing why people fail to make it through the clinic door is
critical to extending the reach and effectiveness of patient care.
Many of the reasons identified here are consistent with factors
previously described in prior research, including studies of
smaller patient and community samples, and reflected in theories
of health behavior and health care use.
1–4,7,10,11,32–37
Interesting-
ly, the categories of reasons that emerged from the present study
mapped almost directly onto a general psychological model of
responses to negative events—Crisis Decision Theory
30
—which
has not previously been used as a framework for understanding
medical care avoidance. Crisis Decision Theory posits that peo-
ple respond to negative events first by appraising the severity of
threat, next by identifying available response options, and lastly
by evaluating available response options.
30
Putting our results
into the language of this framework, participants who reported
low perceived need to seek medical care may have appraised little
threat or perceived high control to respond to the “crisis”them-
selves. Participants who reported factors limiting access may
have felt that their response options were limited and that seeking
medical care was not an option. Participants who reported unfa-
vorable evaluations of medical care may have moved beyond
both of these stages—they may have recognized a need to seek
care (sufficient threat) and perceived seeking care to be a feasible
option, but—in the language of Crisis Decision Theory—did not
expect the gains of seeking care to outweigh the costs.
Our conceptual model proposes that perceptions of the ne-
cessity, availability, and desirability of seeking medical care
may be prime intervention targets for reducing medical care
avoidance. Although in some cases participants may have cor-
rectly assessed that their symptoms would go away with time or
heal on their own, low perceived need to seek care suggests a
need to educate patients on how to recognize symptoms for
common health problems and the value of medical screening for
asymptomatic conditions. For example, many people falsely
believe they can tell when their blood pressure is high.
38
Edu-
cation about the importance of seeking preventive health care
and regular checkups is critical. Public health efforts might
include telephone or printed client reminders that medical visits
are vital to health maintenance, that regular checkups can
identify risk factors and problems before they become serious,
and that treatments are often more effective when disease is
caught early.
39
Interventions utilizing technology such as tele-
medicine and eHealth (e.g., patient portals) may increase patient
engagement with health care, provided they facilitate awareness
of health care services and disease management.
40,41
In terms of
symptom appraisal, research should assess whether people must
reach certain thresholds prior to seeking care.
Traditional barriers limiting access to or ease of seeking
medical care, such as lack of health insurance and time
Taber et al.: Why do people avoid medical care? JGIM
constraints, were the most commonly cited reasons for avoid-
ing medical care, consistent with prior research.
7,21,22,42–44
With the advent of the Affordable Care Act (ACA), lack of
health insurance may become less of a barrier, but our results
indicate that inadequate health insurance and high co-pays are
also reasons for avoiding medical care, as well as numerous other
reasons that may not be abated by the ACA. Interventions
targeting these barriers are an important area for continued re-
search. Strategies designed to tackle multiple barriers simulta-
neously (e.g., case management, financial incentives such as cost-
reduction strategies or efforts to limit out-of-pocket costs) and
comprehensive approaches addressing multiple patient needs
(e.g., multidisciplinary team care
45
) may be more effective in
reducing avoidance than strategies that target only one barrier.
Finally, many people reported unfavorable evaluations of
seeking medical care (e.g., communication problems, concerns
about physicians’trustworthiness and expertise), consistent with
prior research showing the impact of the patient-physician rela-
tionship and medical trust on medication adherence, health care
utilization, and health outcomes.
7,32,46–50
Much intervention
research is focused on improving patient experiences and com-
munication,
51–55
and the frequency of responses indicating dis-
like of both physicians and the health care system confirms that
this intervention focus is well-deserved. However, we also ob-
served a variety of other reasons, such as avoiding specific
recommendations or procedures, which could also be addressed
through interventions aimed at changing negative perceptions
about specific aspects of medical care.
Limitations and Future Directions
There are several important limitations of the present study.
Medical care avoidance due to discomfort with physical
examinations, fear of having a serious illness, and associating
doctors with death may have been underestimated because
these factors were assessed with closed-ended questions im-
mediately prior to the open-ended question analyzed here. The
pattern of differences in demographic factors among individ-
uals who did and did not provide written reasons for avoiding
seeking medical care suggest that responses were provided
more often by people who may have been more favorably
disposed to participate in research (e.g., those with higher
incomes and education levels). Given the subjective nature
of qualitative coding, alternate categorizations of the data are
possible. In particular, reasons categorized here as “unfavor-
able evaluations of seeking medical care”have been concep-
tualized elsewhere as “cognitive barriers.”
15
Few participants
self-identified as members of racial and ethnic minority groups
or were born outside the U.S., which is important because the
breadth and distribution of reasons for medical care avoidance
may be different among these populations. For example, al-
though language is a strong barrier for many immigrant pop-
ulations,
56
only two participants identified language as a rea-
son for avoiding care. Therefore, care should be taken to study
reasons for avoidance among these specific populations.
Further, we cannot be certain that all respondents understood
or paid attention to the exact item wording. We interpreted
responses concerning “no health problems”as evidence for
avoiding preventive screening or routine checkups. However,
this is an extrapolation, and participants’intentions cannot be
known.
In addition to informing intervention development, the present
results are intended to generate hypotheses for future research.
Participants tended to list only one response and were not en-
couraged to report all reasons that were important to them. If
some people avoid medical care for multiple reasons, this may
have reduced the overall reported prevalence of many reasons.
Research is also necessary to test whether there is a linear
decision-making strategy as suggested by Crisis Decision Theo-
ry, as it is possible that various reasons may interact and co-occur.
For example, traditional barriers may exert more influence, or
symptoms may be interpreted as less severe, when people nega-
tively evaluate some aspect of care-seeking, (e.g., fearing bad
news). Prospective research in which participants report symp-
toms and behavioral responses as they unfold would provide
valuable insight into the process of decision-making surrounding
avoidance. Researchers can also follow up on specific reasons
that have been understudied and develop validated scales of
reasons for medical care avoidance, and future research should
test the predictive validity of these reasons for actual avoidance.
Quantitative analyses are necessary because people cannot al-
ways accurately report their motivations
57
and might not be fully
aware of the specific reasons they avoid seeking medical care.
The frequency of specific reasons reported here might overesti-
mate or underestimate the impact of these reasons on actual
avoidance. Finally, asking people to explain why they choose
to seek medical care in some instances but not in others might
provide better understanding of the potentially nuanced and
dynamic patterns and processes of decision-making.
2
Conflict of Interest: The authors declare that they do not have a
conflict of interest.
Corresponding Author: Jennifer M. Taber, Ph.D.; National Cancer
InstituteNational Institutes of Health, 9609 Medical Center Drive,
Bethesda, MD 20892-9761, USA (e-mail: Jennifer.taber@nih.gov).
REFERENCES
1. Byrne SK. Healthcare avoidance: a critical review. Holist Nurs Pract.
2008;22:280–92.
2. Scott S, Walter F. Studying help-seeking for symptoms: The challenges of
methods and models. Soc Personal Psychol Compass. 2010;4:531–47.
3. Yousaf O, Grunfeld EA, Hunter MS. A systematic review of the factors
associated with delays in medical and psychological help-seeking among
men. Health Psychol Rev. 2013:1-13
4. Smith LK, Pope C, Botha JL. Patients’help-seeking experiences and
delay in cancer presentation: a qualitative synthesis. Lancet.
2005;366:825–31.
5. Vanderpool RC, Huang B. Cancer risk perceptions, beliefs, and physician
avoidance in Appalachia: results from the 2008 HINTS Survey. J Health
Commun. 2010;15(Suppl 3):78–91.
Taber et al.: Why do people avoid medical care?JGIM
6. Persoskie A, Ferrer RA, Klein WM. Association of cancer worry and
perceived risk with doctor avoidance: an analysis of information avoidance
in a nationally representative US sample. J Behav Med. 2014;37:977-87.
7. Kannan VD, Veazie PJ. Predictors of avoiding medical care and reasons
for avoidance behavior. Med Care. 2014;52:336-45.
8. Lund-Nielsen B, Midtgaard J, Rorth M, Gottrup F, Adamsen L. An
avalanche of i gnoring–a qualitative study of health careavoidance in women
with malignant breast cancer wounds. Cancer Nurs. 2011;34:277–85.
9. Kiefe CI, Funkhouser E, Fouad MN, May DS. Chronic disease as a
barrier to breast and cervical cancer screening. J Gen Intern Med.
1998;13:357–65.
10. Barbour JB, Rintamaki LS, Ramsey JA, Brashers DE. Avoiding health
information. J Health Commun. 2012;17:212–29.
11. Larkey LK, Hecht ML, Miller K, Alatorre C. Hispanic cultural norms for
health-seeking behaviors in the face of symptoms. Health Educ Behav.
2001;28:65–80.
12. Ristvedt SL, Trinkaus KM. Psychological factors related to delay in
consultation for cancer symptoms. Psychooncology. 2005;14:339–50.
13. Richards MA, Westcombe AM, Love SB, Littlejohns P, Ramirez AJ.
Influence of delay on survival in patients with breast cancer: a systematic
review. Lancet. 1999;353:1119–26.
14. OhlM,TateJ,DuggalM,etal.Rural residence is associated with delayed
care entry and increased mortality among veterans with human immuno-
deficiency virus infection. Med Care. 2010;48:1064–70.
15. Carrillo JE, Carrillo VA, Perez HR, Salas-Lopez D, Natale-Pereira A,
Byron AT. Defining and targeting health care access barriers. J Health
Care Poor Underserved. 2011;22:562–75.
16. Reynolds LM, Consedine NS, Pizarro DA, Bissett IP. Disgust and
behavioral avoidance in colorectal cancer screening and treatment: a
systematic review and research agenda. Cancer Nurs. 2013;36:122–30.
17. Weller D, Vedsted P, Rubin G, et al. The Aarhus statement: improving
design and reporting of studies on early cancer diagnosis. Br J Cancer.
2012;106:1262–7.
18. Moser RP, Arndt J, Han PK, Waters EA, Amsellem M, Hesse BW.
Perceptions of cancer as a death sentence: prevalence and consequences. J
Health Psychol. Jul 17 2013.
19. Capp R, Rooks S, Wiler J, Zane R, Ginde A. National study of health
insurance type and reasons for emergency department use. J Gen Intern
Med. 2014;29:621–7.
20. Cheung PT, Wiler JL, Lowe RA, Ginde AA. National study of barriers to
timely primary care and emergency department utilization amongmedicaid
beneficiaries. Ann Emerg Med. 2012;60:4–10.e12.
21. Baker DW, Shapiro MF, Schur CL. Health insurance and access to care for
symptomatic conditions. Arch Intern Med. 2000;160:1269–74.
22. DeVoe JE, Fryer GE, Phillips R, Green L. Receipt of preventive care
among adults: insurance status and usual source of care. Am J Public
Health. 2003;93:786–91.
23. Goins RT, Williams KA, Carter MW, Spencer M, Solovieva T. Perceived
barriers to health care access among rural older adults: a qualitative study.
J Rural Health. 2005;21:206–13.
24. Ye J, Shim R, Rust G. Health care avoidance among people with serious
psychological distress: analyses of 2007 Health Information National
Trends Survey. J Health Care Poor Underserved. 2012;23:1620–9.
25. Cantor D, Coa K, Crystal-Mansour S, Davis T, Dipko S, Sigman R.
Health Information National Trends Survey (HINTS) 2007 Final Report.
Rockville, MD: Westat; 2009.
26. Nelson DE, Kreps GL, Hesse BW, et al. The Health Information National
Trends Survey (HINTS): development, design, and dissemination. J Health
Commun. 2004;9:443–60.
27. Rutten LF, Moser RP, Beckjord EB, Hesse BW, Croyle RT. Cancer
Communication: Health Information National Trends Survey. Washington,
DC.: National Cancer Institute; 2007.
28. Glaser BG, Strauss AL. The discovery of grounded theory: strategies for
qualitative research. Transaction Publishers; 2009
29. Thomas DR. A general inductive approach for analyzing qualitative
evaluation data. Am J Eval. 2006;27:237–46.
30. Sweeny K. Crisis decision theory: decisions in the face of negative events.
Psychol Bull. 2008;134:61–76.
31. Rittenhouse DR, Shortell SM. The patient-centered medical home: Will it
stand the test of health reform? JAMA. 2009;301:2038–40.
32. Moore PJ, Sickel AE, Malat J, Williams D, Jackson J, Adler NE. Psychosocial
factors in medical and psychological treatment avoidance: the role of the doctor-
patient relationship. J Health Psychol. 2004;9:421–33.
33. Andersen RM. Revisiting the behavioral model and access to medical care:
does it matter? J Health Soc Behav. 1995;36:1–10.
34. Iskandarsyah A, de Klerk C, Suardi DR, Soemitro MP, Sadarjoen SS,
Passchier J. Psychosocial and cultural reasons for delay in seeking help
and nonadherence to treatment inIndonesian women with breast cancer: a
qualitative study. Health Psychol. 2014;33:214–21.
35. Ramirez AJ, Westcombe AM, Burgess CC, Sutton S, Littlejohns P,
Richards MA. Factors predicting delayed presentation of symptomatic
breast cancer: a systematic review. Lancet. 1999;353:1127–31.
36. Scott SE, Walter FM, Webster A, Sutton S, Emery J. The model of
pathways to treatment: conceptualization and integration with existing
theory. Br J Health Psychol. 2013;18:45–65.
37. Walter F, Webster A, Scott S, Emery J. The Andersen Model of Total
Patient Delay: a systematic review of its application in cancer diagnosis. J
Health Serv Res Policy. 2012;17:110–8.
38. Meyer D, Leventhal H, Gutmann M. Common-sense models ofillness: the
example of hypertension. Health Psychol. 1985;4:115–35.
39. Guide to Community Preventive Services. Increasing cancer screening:
client reminders. http://www.thecommunityguide.org/cancer/screening/
client-oriented/reminders.html. (Accessed 5/21/14).
40. Kreps GL, Neuhauser L. New directions in eHealth communica-
tion: opportunities and challenges. Patient Educ Couns.
2010;78:329–36.
41. Chaudhry B, Wang J, Wu S, et al. Systematic review: impact of health
information technology on quality, efficiency, and costs of medical care.
Ann Intern Med. 2006;144:742–52.
42. Blewett LA, Johnson PJ, Lee B, Scal PB. When a usual source of care
and usual provider matter: adult prevention and screening services. J Gen
Intern Med. 2008;23:1354–60.
43. Okoro CA, Strine TW, Young SL, Balluz LS, Mokdad AH. Access to health
care among older adults and receipt of preventive services. Results from the
Behavioral Risk Factor Surveillance System, 2002. Prev Med.
2005;40:337–343.
44. Rezayatmand R, Pavlo va M, Groot W. The impact of out-of-pocket
payments on prevention and health-related lifestyle: a systematic literature
review. Eur J Public Health. 2013;23:74–9.
45. Fennell ML, Das IP, Clauser S, Petrelli N, Salner A. The
organization of multidisciplinary care teams: modeling internal and
external influences on cancer care quality. JNCI Monographs.
2010;72–80.
46. Bynum SA, Davis JL, Green BL, Katz RV. Unwillingness to participate in
colorectal cancer screening: examining fears, attitudes, and medical
mistrust in an ethnically diverse sample of adults 50 years and older. Am
J Health Promot. 2012;26:295–300.
47. Thompson HS, Valdimarsdottir HB, Winkel G, Jandorf L, Redd W. The
Group-Based Medical Mistrust Scale: psychometric properties and associ-
ation with breast cancer screening. Prev Med. 2004;38:209–18.
48. LaVeist TA, Isaac LA, Williams KP. Mistrust of health care organizations
is associated with underutilization of health services. Health Serv Res.
2009;44:2093–105.
49. Hammond WP, Matthews D, Mohottige D, Agyemang A, Corbie-Smith
G. Masculinity, medical mistrust, and preventive health services delays
among community-dwelling African-American men. J Gen Intern Med.
2010;25:1300–8.
50. Arora NK. Interacting with cancer patients: the significance of physicians’
communication behavior. Soc Sci Med. 2003;57:791–806.
51. Rao JK, Anderson LA, Inui TS, Frankel RM. Communication interven-
tions make a difference in conversations between physicians and patients:
a systematic review of the evidence. Med Care. 200 7;45:340–9.
52. Penner LA, Gaertner S, Dovidio JF, et al. A social psychological approach
to improving the outcomes of racially discordant medical interactions. J
Gen Intern Med. 2013;28:1143–9.
53. FawoleOA,DySM,WilsonRF,etal.A systematic review of communi-
cation quality improvement interventions for patients with advanced and
serious illness. J Gen Intern Med. 2013;28:570–7.
54. Anderson LA, Sharpe PA. Improving patient and provider communication:
a synthesis and review of communication interventions. Patient Educ
Couns. 1991;17:99–134.
55. Griffin SJ, Kinmonth AL, Veltman MW, Gillard S, Grant J, Stewart M.
Effect on health-related outcomes of interventions to alter the interaction
between patients and practitioners: a systematic review of trials. Ann Fam
Med. 2004;2:595–608.
56. Clough J, Lee S, Chae DH. Barriers to health care among Asian
immigrants in the United States: a traditional review. J Health Care Poor
Underserved. 2013;24:384–403.
57. Nisbett RE, Wilson TD. Telling more than we can know: verbal reports on
mental processes. Psychol Rev. 1977;84:231–59.
Taber et al.: Why do people avoid medical care? JGIM