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http://informahealthcare.com/jas ISSN: 0277-0903 (print), 1532-4303 (electronic)
J Asthma, 2014; 51(7): 703–713 ! 2014 Informa Healthcare USA, Inc. DOI: 10.3109/02770903.2014.906605
U N D E R S E R V E D P O P U L A T I O N S
Health literacy and asthma management among African-American adults: an interpretative phenomenological analysis
Courtnee Melton, PhD, MS1, Carolyn Graff, PhD2, Gretchen Norling Holmes, PhD3, Lawrence Brown, PharmD, PhD4, and Jim Bailey, MD, MPH5
1 Research Center on Health Disparities, Equity, and the Exposome, University of Tennessee Health Science Center, Memphis, TN, USA,
2 College of
Nursing, University of Tennessee Health Science Center, Memphis, TN, USA, 3Center of Excellence in Rural Health, College of Medicine, University of
Kentucky, Lexington, KY, USA, 4School of Pharmacy, Chapman University, Orange, CA, USA, and 5College of Medicine, University of Tennessee
Health Science Center, Memphis, TN, USA
Abstract
Objective: African-Americans share a disproportionate burden of asthma and low health literacy and have higher asthma morbidity and mortality. Factors that link the relationship between health literacy and health outcomes are unclear. This study aimed to use patients’ experiences of managing asthma to better understand the relationship between health literacy and health outcomes. Methods: This study was the qualitative component of a mixed methods study. Following quantitative data collection, four participants, two with low print-related health literacy and two with adequate print-related health literacy, completed semi-structured interviews. Interview data were analyzed using interpretative phenomenological analysis. Results: Three themes emerged from the analysis: information desired versus information received, trial and error, and expectations of the patient–provider relationship. Individuals with adequate print-related health literacy had different strategies for overcoming barriers related to communicating with their providers, learning about their disease and experiences of discrimination within the healthcare system. Conclusions: Individuals with adequate print- related health literacy may be more equipped to participate in shared decision making and feel more confident to successfully manage their disease. It is also important that health literacy is discussed in the context of the cultural and racial background of the population of interest. This interdependent relationship between health literacy and culture is particularly important for African-Americans.
Keywords
Culture, health disparities, minority health, patient–provider communication
History
Received 24 October 2013 Revised 13 March 2014 Accepted 16 March 2014 Published online 9 April 2014
Introduction
Asthma affects 24.6 million people in the United States, is
responsible for 14.2 million days of missed work [1], and
costs $30 billion dollars in direct expenses annually [2].
While asthma affects all races, African-Americans share a
disproportionate burden of the disease. In addition to a higher
prevalence of asthma, African-Americans have higher asthma
hospitalization rates and higher asthma-specific mortality
rates [1,3]. These disparities result in more days missed from
school and work for African-Americans [4], and while there
are a variety of factors that contribute to these disparities,
health literacy may be a key factor as it influences how
individuals interact with the healthcare system and particu-
larly, patient–provider communication.
The Institute of Medicine defines health literacy as ‘‘the
degree to which individuals have the capacity to obtain,
process, and understand basic health information and services
needed to make appropriate health decisions’’ [5]. In addition
to increased asthma morbidity and mortality, African-
Americans are also more likely to have low health literacy.
Disparities in health literacy are not necessarily due to race,
but to differences in education, culture and the healthcare
system.
Research suggests that individuals with higher educational
attainment are less likely to have low health literacy [5]. Given
that African-Americans tend to have lower levels of educa-
tional attainment overall, compared to non-Hispanic Whites
[6], lower health literacy rates tend to be more prevalent as
well, with 58% of African-American adults compared to 28%
of White adults having low health literacy [5].
Culture, an integral part of health literacy, influences how
people define health and illness. It also influences health
behaviors, perception of medical treatments and how symp-
toms are described [7,8]. Culture is defined as ‘‘the integrated
pattern of human behavior that includes thoughts, communi-
cations, actions, customs, beliefs, values, and institutions
of a racial, ethnic, religious, or social group’’ [9]. African-
Americans have cultural beliefs and attitudes that influence
Correspondence: Courtnee Melton, PhD, MS, Research Center on Health Disparities, Equity, and the Exposome, University of Tennessee Health Science Center, Memphis, TN, USA. Tel: (901) 826-4430. E-mail: [email protected]
how they manage asthma and how they interact with the
healthcare system.
Hardie et al. [10] examined ethnic differences in
words used to describe breathlessness and found that
African-Americans used different words compared to
Whites. African-Americans were more likely to report
upper respiratory symptoms (i.e. tight throat, voice tight
and itchy throat), whereas Whites were more likely to report
lower respiratory symptoms (out of air, aware of breathing
and hurts to breath). Phrases such as ‘‘itchy and tight throat’’
are not commonly used to describe asthma symptoms.
Trochtenberg and BeLue [11] also explored descriptors
of dyspnea in African-Americans and found that participants
had difficulty recognizing their own wheezing and used
their rescue inhalers when they ‘‘just didn’t feel normal.’’
African-Americans’ use of less common symptom descriptors
and health providers’ reliance on these self-reported symp-
toms may result in improper diagnosis or inadequate
treatment.
Regarding health beliefs, Apter et al. [12] found that
African-Americans had greater fear of taking ICS and less
knowledge about asthma compared to other groups. Le et al.
[13] also examined African-Americans beliefs about ICS.
They found that African-Americans were more likely to
have negative beliefs about asthma medications such as
not believing that they required as much medication as
their physician prescribed or that regular use of medications
would decrease their tolerance to the medications. Cultural
differences in how asthma symptoms are described and
health beliefs among African-Americans influence how
patients interact with healthcare providers; these differences
can influence patients’ health literacy.
Healthcare interactions take place within a larger society.
Societal norms and realities in the larger society are present
in health care, as well. Both patients and providers bring their
attitudes, experiences and culture into patient–provider com-
munication. African-Americans have historically experienced
injustices by the medical community [14–17], and these past
injustices have created a distrust of the healthcare system.
It has also been documented that that African-Americans
receive lower quality of care compared to Whites [18], and
African-Americans also believe that they receive lower
quality care and are treated differently than Whites [19].
For example, physicians perceive African-Americans and
individuals with low socioeconomic status (SES) less favor-
ably than Whites and high SES individuals [20]. African-
American patients have more negative attitudes toward health
care, view physicians more negatively and are more likely
to perceive racial discrimination when interacting with
the healthcare system [20]. Minority patients are also less
likely to receive empathy from physicians, establish rapport,
receive adequate medical information and be encouraged to
participate in the decision making process [21]. Previous
research has demonstrated that education, culture and differ-
ent experiences in the healthcare system contribute to low
health literacy among African-Americans.
Low health literacy is associated with decreased asthma
knowledge [22], decreased self-efficacy [23], decreased
willingness to participate in the decision making process
[24] and an increased number of asthma-related
hospitalizations and emergency department visits [25,26].
Furthermore, African-American patients exhibit greater dif-
ficulty communicating with providers compared to Whites.
They are less likely to engage in shared decision making, have
greater distrust of the healthcare system and are more passive
during medical encounters [27,28]. Understandably, patient–
provider communication is a partnership. Both parties con-
tribute to the effectiveness of the interaction, and adequate
communication skills are needed. Patients must be able to ask
questions, accurately describe their symptoms and recount
their medical history [27]. Physicians and other healthcare
providers must be able to describe illness and treatments
in plain language, develop rapport with the patient and be
willing to listen and negotiate. Communication is most
successful when both parties have the aforementioned skills.
The patient also has the ability to influence how the physician
communicates. Physicians respond positively to patients who
actively participate in the interaction. If a patient gives details
about their symptoms, concerns, medical history and asks
questions, the physician is more likely to treat the patient as
partner in the decision-making process [28]. Qualitative
analysis of patient–provider interactions found that compared
to individuals with adequate health literacy, patients with low
health literacy were more likely to ask questions for clarity
purposes as opposed to asking questions that resulted in more
in-depth conversations [29]. Similarly, Arthur et al. [30] found
that compared to patients with adequate health literacy,
patients with low health literacy had more paternalistic
interactions with their physicians.These interactions were
characterized by the physician dominating the discussion
and the patient being more passive. Decreased involvement
in interactions among patients with low health literacy is
concerning as research has found that patients with low health
literacy benefit more (i.e. greater self-efficacy) from active
participation with physicians than patients with higher levels
of health literacy [31]. When rating patient–provider inter-
actions, patients with low health literacy reported feeling
more confused about their care because their providers did not
explain things well and that they did not have enough time
to explain their concerns to their providers when compared to
patients with adequate health literacy [32]. Differences in
patient–provider communication among individuals with low
health literacy negatively impacts their ability to manage their
disease. Health literacy’s contribution to patient–provider
communication is important because effective communica-
tion is associated with more patient satisfaction, increased
adherence to treatment and better health outcomes [21].
The National Institute of Health recommends that all
individuals with asthma receive asthma action plans and
continuous asthma self-management education from diagno-
sis through follow-up care [33]. Although evidence-based
guidelines for asthma education exist, there has been a
low adoption of these recommendations. Furthermore, the
dissemination of standardized asthma-self-management edu-
cation may be more difficult in low-income, minority
populations who experience greater difficulties communicat-
ing with providers due to low health literacy and the lack
of culturally appropriate education materials. These factors
may also contribute to asthma disparities seen among
African-Americans [34].
704 C. Melton et al. J Asthma, 2014; 51(7): 703–713
Compared to other chronic diseases such as diabetes,
there is limited research on the prevalence of low health
literacy among African-Americans with asthma, especially
regarding the degree to which low health literacy contributes
to poor health outcomes [3] and the patient experience of
managing asthma with low health literacy. Yet, it is vital
that the perspective of this population is included in
research to gain better understanding and to ultimately
inform clinical practice and decrease disparities. The majority
of chronic disease management takes place outside of
health providers’ care. Individuals make daily decisions
about their health and are indeed experts about their disease.
Therefore, efforts to improve patient outcomes should include
the patient perspective of disease management, presented
in this study.
Methods
This data was collected as part of a larger mixed methods
study that examined mediators of the relationship between
health literacy and health outcomes among African-
American adults with asthma. The mixed methods study
was a sub study of a multi-site clinical trial testing the
effectiveness of two different types of asthma medications in
African-American adults with asthma. The inclusion criteria
for the clinical trial required that all participants must have
been previously diagnosed with only asthma and no other
respiratory diseases, and this diagnosis was verified by their
medical records. In addition to the diagnosis, participants
also had to have a lifetime smoking history of less than
10 pack years. This study, the qualitative portion of the
mixed methods study was exploratory in nature, focused
on the patient experience and illuminated different topic
areas related to health literacy (i.e. information seeking
behaviors, patient–provider communication and self-man-
agement behaviors). Prior to completing the interviews,
participants completed cross-sectional surveys. Survey data
collected included demographic information, numeracy [35],
print-related health literacy [36], self-efficacy [37], asthma
knowledge [38], asthma control [39] and asthma-related
quality of life [40]. Health-related numeracy was determined
using the Newest Vital Sign (NVS).While the NVS does not
measure numeracy alone, it is more numeracy oriented than
other health literacy measurement tools. Previous studies
have also used the NVS as a measure of health-related
numeracy [41–43]. The NVS scores were dichotomized into
either adequate or possibility of limited numeracy. Scores
ranging from zero to three were classified as possibility of
limited numeracy, and scores between four and six were
classified as adequate. Print-related health literacy was
measured using a test developed by Chew et al. [36].
The participants were asked, ‘‘How confident are you
filling out medical forms by yourself?’’ They responded
with ‘‘extremely’’, ‘‘quite a bit’’, ‘‘somewhat’’, ‘‘a little
bit’’, or ‘‘not at all.’’ Based on previous literature [36,44],
the ‘‘somewhat’’ response was used as the threshold.
Participants who answered ‘‘somewhat’’, ‘‘a little bit’’
or ‘‘not at all’’ were classified as having low print-related
health literacy, and those who answered ‘‘extremely’’
or ‘‘quite a bit’’ were classified as having adequate
print-related health literacy. Following the quantitative
phase of the larger study, a list of participants with adequate
print-related literacy and a list of participants with low print-
related health literacy were generated. Participants from
each list were then called to see if they would be willing to
complete and interview. The first participants who agreed to
participate and had transportation to come to the office to
complete the interviews were selected, and two participants
with low print-related health literacy and two participants
with adequate print-related health literacy completed semi-
structured interviews. Participants received no incentive for
completing the interviews.
Interpretative phenomenological analysis (IPA) is a quali-
tative approach that originated in the field of psychology
and is exploratory in nature [45–47]. It is appropriate when
trying to understand how an individual perceives and
makes sense of a situation [48]. IPA is a combination of
phenomenological theory and symbolic interactionism.
Phenomenology is concerned with the individual’s perception
and experience and does not aim for objectivity. Symbolic
interactionism is also focused on subjectivity, but believes
that the meaning of the individual’s experience is interpreted
through the researcher. IPA is focused on the individual
but embraces the interpretative and analytical role of the
researcher [47,48]. Small sample sizes are used when
conducting IPA as this type of analysis focuses on developing
an in depth understanding of a particular group as opposed
to making generalizations [48]. The small sample size of
four participants was appropriate for the methodology used
in this study.
There are basic guidelines for analyzing data using IPA.
The first stage of analysis involves becoming familiar with
the data by reading the transcript multiple times. During
this stage, the researcher notes anything they find interesting
or significant in the participant’s responses. The second
stage involves turning initial thoughts and comments into
emerging themes. These emerging themes are phrases
that embody what was found in the initial notes. Next, the
researcher looks for connections between the emerging
themes, which involve a theoretical or analytical ordering of
the emerging themes. These connections must be supported
by the respondent’s actual words. Finally, the emerging
themes are put into clusters, and the clusters are given a name
that represents the emergent themes. Again, the clustering
is supported by the transcript [48].
Each participant completed one interview, and interviews
lasted between 45 and 60 minutes. All interviews were
recorded and transcribed verbatim. Following transcription,
data were analyzed using the four previously described steps
outlined by Smith and Osborn [48]. Each case was analyzed
separately and then convergent and divergent themes among
cases were examined. Themes found in one interview were not
used to inform subsequent interviews. Once all of the cases
were analyzed, final superordinate themes from all cases were
determined. QDA Miner (Provalis Research, Montreal,
Quebec, Canada) was used for data analysis. After initial
coding, a second researcher reviewed the transcripts to insure
the themes were represented by the data from each participant.
This study received approval from the Institutional Review
Board at the University of Tennessee Health Science Center.
DOI: 10.3109/02770903.2014.906605 Health literacy and asthma management 705
Results
Sample characteristics of the interviewees are listed in
Table 1. Three major themes emerged from the analysis:
information desired versus information received, trial and
error, and expectations of the patient–provider relationship.
Individual clusters and themes for each participant are listed
in Table 2.
Information desired versus information received
All participants noted discordance between the content, depth
and amount of information that they received from their
healthcare providers and the information that they desired
to successfully manage their asthma. Participants were given
basic information about the pathophysiology of asthma and
how to take asthma medications properly. Some participants
only received oral information from their providers, while
others attended asthma education classes. All participants
expressed a desire to learn about their disease and suggested
formal educational opportunities to get information. This was
demonstrated by Participant 1 who said, ‘‘If you got asthma,
why not have a class and let people come there and get
educated about asthma you know?’’ Participant 2 stated:
‘‘No they never sent me to an educational class, but that
probably would be good for someone like me that has the
determination that they decide that ‘I’m not gonna use that
pump.’ Ok so a person like me should have already been
in a class. It should have been something set out. You need
to go to this class and see what happen to people when they
don’t use that pump every day.’’
Participants also had ideas about the content that these
classes should cover. When discussing class content,
Participant 2 said:
‘‘What is asthma? What medications that they have on the
market for asthma. Uh, what uh triggers. What can trigger
asthma? And what you need to do once you realize that
you’re having a asthma attack because I’m telling you, a lot
of people don’t know they havin’ a asthma attack.’’
The need for more information about what triggers one’s
asthma was important to all the participants. Participant 1
who had previously attended an asthma education class
suggested changes to the content saying, ‘‘In 2004, they
didn’t really say how serious (asthma was). They let us know
it (asthma) could get serious whereas everybody should
know it’s a serious thing . . . I mean people die have died from having asthma attack. It could get that bad.’’
In addition to an educational class, participants also had
other suggestions to help patients to learn about asthma.
Participant 2 said:
‘‘I think it should be a pamphlet in every asthma doctor’s
office; that if you goin’ to specialist, they need to have
to give you so that you can read up on it . . . and um, I think they need to have in that pamphlet some foods that
you need to avoid uh, when you have asthma.’’
While all participants had a desire to learn about their
asthma and wanted structured opportunities, participants with
adequate print-related health literacy were more proactive
than participants with low print-related health literacy in
obtaining the information that they needed. Both participants
with adequate print-related health literacy reported using
computers to learn about asthma. Participant 3 said:
‘‘I have become computer literate. So I go down and look
on the computer about asthma. And with me having it from
95 up until now, I uh, didn’t really have a source of
information unless I got sick . . . but now if there’s some- thing new that I need to know, I keep in touch with what
asthma is on the computer.’’
Participant 2 said, ‘‘When I really learned about asthma,
I learned it from going into the computer and pullin’ stuff
out.’’ Although both participants relied heavily on computer
information, neither of them knew how to determine if the
information was from a reliable source. Participant 2 reported,
‘‘If I’m reading something, and it’s some of the side effects
I’m having, I believe it. And if it’s not, then I go back and
ask my doctor.’’ When asked how she determined if the
information she found on the computer was true, Participant 3
reported:
‘‘Well to tell you the truth, I don’t cause it’s so much going
on on the computer. And with me being the age I am, I am
thankful that I can go in and put it on the uh on the website,
and type in asthma uh asthma related, and they will go
to the source.’’
Both participants also noted that they take internet
information with them to their doctor’s appointment to
Table 1. Characteristics of interview participants.
Participant Age Education Insurance Print literacy Numeracy ASE Asthma knowledge AQLQ-S ACQ Gender Smoking history
1 57 Some college Public Low Limited 56 67% 4.59 1 Female 510 pack years 2 64 High school Uninsured Adequate Limited 54 59% 5.03 1 Female 510 pack years 3 68 5High school Public Adequate Limited 57 63% 5.16 1 Female 510 pack years 4 59 Some college Public Low Limited 57 71% 3.16 2.83 Female 510 pack years
Print literacy is print-related health literacy. ASE (Asthma Self-efficacy Scale) scores ranged from 14 to 70 with higher scores indicating higher self- efficacy. Asthma knowledge scored as percent correct. AQLQ-S (Standardized Asthma Quality of Life Questionnaire) scores ranged from 1 to 7 with higher scores indicating better quality of life. An ACQ (Asthma Control Questionnaire) score of 0.75 or less indicates an 85% chance that the individual has well-controlled asthma. A score of 1.50 or higher indicates an 88% percent chance that asthma is not well-controlled. All of the participants had been nonsmokers for at least one year prior to being interviewed. A pack year is defined as 20 cigarettes smoked every day for one year.
706 C. Melton et al. J Asthma, 2014; 51(7): 703–713
T a b
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DOI: 10.3109/02770903.2014.906605 Health literacy and asthma management 707
continue to discuss what they learn. Participant 2 noted,
‘‘Most of the time I bring a paper and say this is what I got
off the internet.’’ Participant 3 said, ‘‘The more information
you receive or however you receive it. TV, computer, book
or whatever you um try to see which one is more helpful to
you when you get to your doctor’s office.’’
Although individuals with low print-related health literacy
did not mention using computers to learn about their asthma,
they did try to use whatever information was given to them to
learn about their asthma. Participant 4 took it upon herself
to read the medication inserts that came with her asthma
medications but found the information hard to understand.
She said:
‘‘I try to learn by reading what’s inside of the package
when I open it. You have to be a mad scientist to really
understand. But some of it, I kind of you know, you know,
get the idea what they’re saying, you know . . . look like they writing to the doctor.’’
All of the participants believed that knowledge of asthma
was important and beneficial for individuals with asthma to
manage their disease. It is important to note that none of the
patients with adequate print-related health literacy mentioned
any difficulties understanding the information they received
from their doctors or information they found on the internet.
Regardless of print-related health literacy skills, all partici-
pants stated that at this point in their life, they had enough
information to successfully manage their asthma.
Trial and error
The participants described asthma self-management as a
learning process. This theme was best described by
Participant 3 who said, ‘‘I see that it’s a trial and error
which you can’t really afford to have errors.’’
Participants had different feelings about being in control of
their asthma. Both of the participants with adequate print-
related health literacy felt that they were in control of their
asthma. However, feeling in control of one’s asthma did not
mean that an individual exercised complete control in every
situation. This was demonstrated by Participant 2 who said,
‘‘Um most of the time, I feel like I’m in control. But when
you have that bad asthma attack, no you’re not in control
anymore. Asthma can kill you if you don’t manage it right.’’
Unlike the participants with adequate literacy, participants
with low health literacy did not give a definitive yes about
being in control of their asthma. Participant 1 said, ‘‘I mean
I do what I’m supposed to do, and it’s been working pretty
good. When it [asthma] wants to cut up, it’s gon’ cut up, and
there’s no way I can uh stop it.’’
When discussing the relationship between patient and
providers, participants reported the expectations they had of
their providers. In addition to provider expectations, partici-
pants discussed their roles in the relationship and different
factors that affect their interactions with their providers.
Expectations of the patient–provider relationship
All participants expected their provider to listen to them and
expressed dissatisfaction when they felt that their providers
were not listening to them. Participant 2 reported, ‘‘I would
just tell him [doctor]; I just want you to listen to me about
what’s going on with my body instead of writing while I’m
talking to you. Look at me. Then I know that you listening
to me.’’ Participant 4 said, ‘‘I didn’t feel like they were really
interested. They were just talking. This is what they supposed
to do, just talk. It wasn’t really concern.’’ In addition to being
good listeners, participants expected their doctor to treat them
as a whole person and not just treat their asthma. Participant 4
reported, ‘‘I just want my doctor to recognize who
I am . . . and they say ‘‘well let’s see how you doin’,’’ you know.’’ Participant 1 reported, ‘‘She [participant’s doctor]
know pretty much what’s going on with me period. She know
with my body.’’
Participants also acknowledged that although their pro-
viders knew more than they did, but they still had something
to contribute and wanted their providers to recognize their
contributions. Participant 2 said, ‘‘They’re in charge. I do
what they say, but we have a good relationship. And I don’t
care how long it takes. He knows he has other patients, but
I will talk to him.’’ Participant 1 said, ‘‘If they [doctors] don’t
agree with me, they’ll listen to me or whatever . . . they’re going to run some tests to confirm what they think or to rule
out what I think.’’
Participants with adequate print-related health literacy
reported seeking care elsewhere when their expectations were
not met. Participant 2 said, ‘‘You gonna talk to me or you
gonna put me on out, and I’m gonna go find me another
doctor.’’ Standards of acceptable care extended not only to the
provider but also to the entire experience. Participant 3 said,
‘‘Except the last time I called to make an appointment, and
then the receptionist was really awful. Well the heck with
that. So I went to another doctor. They were good.’’ The
participants with low print-related health literacy did not
report changing doctors because they were not satisfied
with the care they were receiving.
As previously discussed, participants want their providers
to listen to them. All of the participants reported that
they were responsible for telling their providers all of their
symptoms. Participant 3 said, ‘‘I’m gonna tell them every-
thing.’’ Participant 2 said, ‘‘It is my responsibility to tell the
doctor the truth.’’ Participants with adequate print-related
health literacy were more engaged as patients than partici-
pants with low health literacy. They believed it was important
to bring information to their providers. Participant 2 said,
‘‘I think today, they really look for you to go into the
computer and come back and say something.’’ Participant 3
reported:
I know they know more than I do, but I share this
information with them. What I have seen, and uh I tell
them, ‘‘You know she gave me flovent, and she gave me
this, and she gave me that, but I find one of them to be very
helpful.’’
Participants with adequate print-related health literacy also
reported taking ownership of their disease and their bodies.
Participant 3 said, ‘‘I’m tellin’ them what’s going on with
me cause I know my body.’’ Participant 2 said, ‘‘It’s my
health. It’s not theirs.’’ These participants also treated
708 C. Melton et al. J Asthma, 2014; 51(7): 703–713
the patient–provider relationship as a partnership.
Participant 2 said, ‘‘You got to have some uh uh focus
on what you want to happen to you with this asthma other
than waitin’ on your doctor, takin’ your hand, walkin’ us.’’
Participants with adequate health literacy also believed
that a good relationship with their providers was necessary
for taking care of their asthma. Participant 2 reported,
‘‘You have to build rapport with your doctor. It come
from building.’’ Participant 3 said, ‘‘The best thing to do
is to have good communication with your doctor.’’
These ideas of rapport and bringing information to your
doctor’s visits were not reported by individuals with
low print-related health literacy. Although participants
with low print-related health literacy did not discuss
building rapport with their providers, one participant
noted the impact of good rapport on her self-management.
Participant 1 reported, ‘‘I’m comfortable to the point where
I don’t have a problem taking my medicines. If I’m
not comfortable with my doctor, I’m not going to take the
medicine.’’
Participants discussed several factors that impacted their
relationships with their providers. These factors included
mistrust, comfort and race. Participants reported their
mistrust of doctors regarding the medications that they were
prescribed for their asthma. Participant 1 said, ‘‘. . . My actual feeling about doctors are that they are in with the pharmacies
. . . and it may not be something that you really need, but they got a contract or whatever.’’
In addition to mistrust about providers’ prescribing habits,
participants recalled experiences of being an African-
American in the healthcare system. Participant 4 reported,
‘‘You hear how others they have done people in the past. You
know, specially our people, you know. And uh, it make
you wary. That’s the reason a lot of Blacks are wary about
doctors.’’ This patient also recalled an experience where
she felt the provider did not want to touch her because she
was African-American. She reported:
‘‘I have went to the doctor and he say ‘You got asthma?’
Mmhmm that’s right. Uh pull that coat and then he got
a ink pen and did something like he didn’t want to touch
me . . . Maybe it’s a phobia or maybe you don’t like brown skin mmhmm.’’
Another participant also had negative experiences with
providers. Participant 3 reported, ‘‘I think when I first got
pregnant and went to the doctor I was really timid . . . you still had some of these prejudice white folks.’’ It is important
to note that the participant whispered when she said ‘‘white
folks’’ and would often touch and point to her skin instead
of saying ‘‘black.’’
The topic of race was not introduced by the interviewer.
The influence of race evolved from discussing patient–
provider communication. In addition to race, a participant
also felt discriminated against for being overweight, and
she felt that providers have looked at her like she was
‘‘just disgusting’’ and attributed her asthma to her being
overweight. Participant 4 reported that discrimination is not
always overt saying, ‘‘Yeah, yeah, suppose to it’s a lot of
things they do behind closed doors, and what nobody there to
witness, you know. You know, they say I never done that.
I never said that, but you know deep down inside.’’
Both participants with adequate print-related health liter-
acy discussed ways to overcome mistrust and discrimination.
Participant 2 emphasized the importance of building rapport
with her doctor saying:
‘‘You shouldn’t just have to build a rapport. It should be
one when you get there, but in this society people look at
the way you dress, your mannerisms. They look at your
hair. They look at your eyes. They look at your everything,
and that’s what they judge you by. They look at you don’t
have no money. They look at your insurance. They look
at everything. So you have to build rapport with your
doctor.’’
Participant 3 used information to combat negative experi-
ences saying:
‘‘All you wanna do is learn how to take care of yourself
without asking anyone to help and I got to the point where
I was real smart . . . so I just started to researching a lot of stuff and that built up my confidence . . .’’
Discussion
Interviews revealed that all participants, regardless of print-
related health literacy skills, reported a disparity between
the information that they received from their providers and
the information that they felt was important for them to take
care of their asthma. However, participants with adequate
print-related health literacy were more likely to supplement
the information they received from their providers with other
sources of information. This was evidenced by their reports
of using the internet and books to learn about their asthma.
Because individuals with adequate print-related health
literacy were seemingly more proactive about acquiring
information about their disease, they may have greater
disease knowledge or be more confident about taking care of
their asthma. These findings may offer insight into the
results of Osborn et al. [49] who found that knowledge, not
health literacy, was a significant predictor of self-efficacy.
A participant in this study reported that the more informa-
tion she learned about her asthma, the more confident she
felt taking care of her asthma. In addition to seeking more
information from outside sources, participants with adequate
print-related health literacy were also more active patients.
They felt it was their responsibility to bring information
from the internet to their doctors. Katz et al. [29] found
that patients with low health literacy were less likely to
ask questions and participate during a medical counter.
A previous qualitative study by Baker et al. [50] found
that patients with low health literacy felt that their providers
did not listen to them or explain medical problems in a way
that they could understand, but these patients were less
likely to ask questions or admit that they did not understand.
Increased information seeking by patients with adequate
print-related health literacy may give patients more confi-
dence, willingness and tools to interact with their providers.
In addition to increased information seeking, participants
DOI: 10.3109/02770903.2014.906605 Health literacy and asthma management 709
with adequate print-related health literacy mentioned that
they shared responsibility for building rapport with their
doctors. Building rapport has traditionally been a responsi-
bility of the provider; however, individuals with adequate
print-related health literacy may feel more confident or
empowered to build the relationship. Previous research has
found that individuals with adequate health literacy were
more likely to contribute equally during patient–provider
interactions compared to individuals with low health literacy
[30]. Although this study and previous research found a
relationship between patient activation and print-related
health literacy [29,50], other research has reported no
association between the two [51]; rather that health literacy
and patient activation were associated with different aspects
of disease management. Health literacy influenced decision
making, while patient activation influenced self-management
behaviors. In our study, health literacy influenced both
decision making and self-management behaviors.
Participants with adequate print-related health literacy
worked to build rapport with their doctors, sought health
information from multiple sources and shopped for care that
met their standards. Participants with adequate print-related
health literacy also navigated the healthcare system as
consumers. They reported finding new doctors and/or clinics
when they were not satisfied with the care their doctor
provided or the temperament of the staff who worked at the
clinic. Although participants with adequate print-related
health literacy were more active, all participants had similar
expectations from their providers. In addition to being
treated for asthma, the participants desired to be respected,
listened to and desired a holistic approach to managing their
asthma. Participants with adequate print-related health
literacy may be more empowered to make sure they receive
the type of care that they desire. It is necessary to help
individuals with low health literacy be informed consumers
as well.
While participants with adequate print-related health
literacy sought more information from outside sources, they
did not demonstrate increased asthma knowledge compared
to the participants with low print-related health literacy.
This finding may appear counterintuitive. However, having
low print-related health literacy does not equate to the
inability to learn about one’s disease. Furthermore, print-
related health literacy is only one dimension of health literacy,
and the participants differed in their information seeking
behaviors, communication with providers and how they
navigated the healthcare system. Health literacy is more
than the ability to read and comprehend written information
and includes the aforementioned skills.
Participants also reported general mistrust of providers and
concerns about being treated differently by providers because
they were African-American. Both of these factors negatively
influenced the patient–provider relationship. These findings
support previous research showing that African-Americans
have greater distrust of the healthcare system [28]. In this
study, perceptions of racial discrimination were based on
historical knowledge of racism and personal experiences
of perceived racism in health care. Participants were less
likely to take their asthma medications as prescribed if
they did not trust their provider. This finding supports
previous research demonstrating that poor patient–provider
communication has a negative impact on medication adher-
ence [52,53]. Adequate patient–provider communication is
important for all patients, but may be particularly important
for patients with low health literacy. Providers should
carefully listen to minority patients, elicit their concerns and
work to build rapport and open communication that leads to
a true patient–provider partnership.
In this study, participants recalled perceived discrimination
inside and outside of the healthcare system. Participants’
introduction of race into their descriptions of patient–provider
communication supports the interrelationships between his-
torical perspectives and patient management of asthma.
Experiences of perceived discrimination negatively influ-
enced how all participants interacted with their healthcare
providers, yet participants with adequate print-related health
literacy used strategies such as actively building rapport with
their doctors and learning about their disease to overcome
their mistrust of doctors and negative experiences due to race.
However, participants with low print-related health literacy
did not report any of these strategies. Consequently, cultural
factors (i.e. symptom descriptors, distrust and negative health
beliefs) may exacerbate or contribute to low health literacy
by negatively influencing patient–provider communication.
Both parties are influenced by the communication style of
the other, and both patients and providers contribute to the
success of the interaction. If a patient has previous experi-
ences or knowledge of racial discrimination in the healthcare
system, they are less trusting of the provider, information they
receive from the provider and may be less willing to engage
with their provider. A lack of contribution by the patient
can result poorer patient–provider communication. Results of
this study suggest that individuals with adequate print-related
health literacy may have more success overcoming negative
experiences and have higher quality patient–provider
communication.
Conclusions/key findings
Findings from this study suggest that health literacy influ-
ences patient engagement in patient–provider communication
and patient activation. Individuals with adequate print-related
health literacy place greater importance on their contribution
to forming a partnership with their doctors and are more
confident and willing to participate in shared decision making
and navigate the healthcare system. Although all participants
described mistrust of healthcare providers, individuals with
adequate health literacy may be more equipped to overcome
mistrust of providers. The interplay between culture and
health literacy was also important for this population. Future
research should examine the role of patient activation and
determine ways to empower patients to mitigate the impact of
low health literacy as well as interventions that increase
providers’ awareness and ability to communicate with patients
who have low health literacy. In addition to patient activation,
the relationship between health literacy and culture should be
explored as well. This relationship may be particularly
important for minorities and other underserved or margin-
alized groups. The patient perspective is not only important
for identifying and describing issues, but this perspective is
710 C. Melton et al. J Asthma, 2014; 51(7): 703–713
vital to developing solutions to mitigate the impact of low
health literacy on health outcomes.
The results of this study have implications for improving
patient–provider communication among minority popula-
tions. First, providers and healthcare workers should
receive training that integrates cultural competency and
health literacy. Literacy and communication interventions
and cultural competence interventions are not delivered
simultaneously, and each of those trainings emphasizes
different skills. In this study population, an ideal training
would not only review recommended communication strate-
gies (i.e. using non written materials; talking slower; limiting
the amount of background information and focusing on
specific things patient needs to know for self-care, including
family members and other caregivers; and demonstrating
skills to patient and having the patient demonstrate the skill
to confirm that patient understands) [54] but also take
into account the different symptom descriptors, health beliefs
and distrust of the healthcare system that is seen among
African-Americans. Through the integration of cultural
competency and health literacy training, providers would be
able to more effectively communicate with their patients and
provide care that is patient-centered. Because communication
is a dyad, interventions that focus on patient empowerment
would also help improve patient–provider communication.
Interventions that focus on empowering patients to be
involved in the decision-making process can increase patient
self-efficacy, assertiveness and shared decision making [55]
leading to a more effective and satisfying provider–patient
interaction. Effective patient–provider communication is
essential to better health outcomes in this vulnerable popu-
lation. Patient–provider communication can best be improved
with both patient and provider focused interventions. Both
parties are influenced by the communication style of the
other, and both patients and providers contribute to the
success of the interaction.
Limitations
This study does have several limitations primarily due to
the sample used for the study and that participants only
completed one interview. The sample was a homogenous and
unique group of older African-American women. While the
results may not be generalizable to a wider audience, this
sample was useful for achieving the purpose of transferability.
The study was not undertaken with the goal of generalizing
the findings, but of gaining and in-depth understanding of
patients’ experiences. IPA is carried out with the belief that an
individual’s experience and perception can provide insight
into a larger phenomenon. We believe these results are
transferable to other African-American women with asthma as
some of themes found in the interviews were consistent with
previous literature. In addition to the homogenous group of
participants, only print-related health literacy skill was used
to identify participants for interviews. Consequently, all of the
participants who completed interviews had limited numeracy
skills. The perspective of individuals with both adequate
print-related health literacy and adequate numeracy was not
included in this study. Exclusion of these individuals may
have resulted in decreased insight into the impact of adequate
numeracy. In addition to the homogenous sample, the
instruments used to measure health literacy in this study
presented limitations as well. The shortcomings of existing
health literacy measurement tools have been well documented
[56,57]. More research is needed to develop health literacy
tools that more effectively and comprehensively measure the
concept of health literacy. Although they may not be ideal,
the Chew items, like other health literacy measurement
instruments, continue to be used to detect inadequate health
literacy, particularly in the absence of better measurement
tools. Individuals who agreed to participate in the larger study
may be different from individuals who chose not to partici-
pate. Individuals interested in participating in research may be
more active participants in their health care and be more
informed patients than those who chose not to participate.
In addition to sampling, participants in this study only
completed one interview. It is possible that multiple inter-
views would have provided greater insight into asthma self-
management than one interview alone. Finally, this study
focused on the patient perspective and did not include the
experience of providers. We note that this is a limitation of
the study because communication requires both patients
and providers.
Declaration of interest
The authors report no conflicts of interest. The authors alone
are responsible for the content and writing of this article.
References
1. Akinbami LJ, Moorman JE, Liu X. Asthma prevalence, health care use, and mortality: United States, 2005–2009. Natl Health Stat Report 2011;32:1–14.
2. Kamble S, Bharmal M. Incremental direct expenditure of treating asthma in the United States. J Asthma 2009;46:73–80.
3. Diette GB, Rand C. The contributing role of health-care commu- nication to health disparities for minority patients with asthma. Chest 2007;132:802S–809S.
4. Canino G, McQuaid EL, Rand CS. Addressing asthma health disparities: a multilevel challenge. J Allergy Clin Immunol Pract 2009;123:1209–1217; quiz 18–19.
5. Nielsen-Bohlman L, Panzer AM, Kindig DA. Health literacy: a prescription to end confusion. Washington DC: National Academies Press; 2004.
6. Aud S, Fox MA, KewalRamani A. Status and trends in the education of racial and ethnic groups. NCES 2010–015. Washington DC: National Center for Education Statistics; 2010.
7. Andrulis DP, Brach C. Integrating literacy, culture, and language to improve health care quality for diverse populations. Am J Health Behav 2007;31:S122–S133.
8. Kreuter MW, Haughton LT. Integrating culture into health infor- mation for African American women. Am Behav Sci 2006;49: 794–811.
9. Cross, TL. Towards a culturally competent system of care: a monograph on effective services for minority children who are severely emotionally disturbed; 1989, Georgetown University, Washington DC.
10. Hardie GE, Janson S, Gold WM, Carrieri-Kohlman V, Boushey HA. Word descriptors used by African-American and White asthma patients during induced bronchoconstriction. Chest 2000;117:935–943.
11. Trochtenberg DS, BeLue R. Descriptors and perceptions of dyspnea in African American asthmatics. J Asthma 2007;44:811–815.
12. Apter AJ, Boston RC, George M, Norfleet AL, Tenhave T, Coyne JC, Birck K, et al. Modifiable barriers to adherence to inhaled steroids among adults with asthma: it’s not just black and white. J Allergy Clin Immunol 2003;111:1219–1226.
DOI: 10.3109/02770903.2014.906605 Health literacy and asthma management 711
13. Le TT, Bilderback A, Bender B, Wamboldt FS, Turner CF, Rands CS, Bartlett SJ. Do asthma medication beliefs mediate the relationship between minority status and adherence to therapy? J Asthma 2008;45:33–37.
14. Dennis BP, Neese JB. Recruitment and retention of African American elders into community-based research: lessons learned. Arch Psychiatr Nurs 2000;15:3–11.
15. Thompson EE, Neighbors HW, Munday C, Jackson JS. Recruitment and retention of African Americans patients for clinical research: an exploration of response rates in an urban psychiatric hospital. J Consult Clin Psychol 1996;64:861–867.
16. Thomas CR, Pinto HA, Roach M, Vaughn CB. Participation in clinical trials: is it state-of-the-art treatment for African Americans and other people of color? J Natl Med Assoc 1994;86:177–182.
17. Gamble VN. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health 1997;87:1773–1778.
18. Smedley BD, Stith AY, Nelson AR. Unequal treatment: confronting racial and ethnic disparities in health care. Washington DC: National Academies Press; 2009.
19. Lake, Snell, Perry, & Associates, INC. Results from a national survey poll. 2003. Americans speak out on disparities in health care. Available from: http://www.phsi.harvard.edu/health_reform/ last accessed 20 October 2013
20. Perloff RM, Bonder B, Ray GB, Ray EB, Siminoff LA. Doctor- patient communication, cultural competence, and minority health – theoretical and empirical perspectives. Am Behav Sci 2006;49: 835–852.
21. Ferguson WJ, Candib LM. Culture, language, and the doctor- patient relationship. Fam Med 2002;34:353–361.
22. Gazmararian JA, Williams MV, Peel J, Baker DW. Health literacy and knowledge of chronic disease. Patient Educ Couns 2003;51: 267–275.
23. Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. Inadequate literacy is a barrier to asthma knowledge and self- care. Chest 1998;114:1008–1015.
24. Mancuso CA, Rincon M. Asthma patients’ assessments of health care and medical decision making: the role of health literacy. J Asthma 2006;43:41–44.
25. Apter AJ, Cheng J, Small D, Bennett IM, Albert C, Fein DG, George M, Van Horne S. Asthma numeracy skill and health literacy. J Asthma 2006;43:705–710.
26. Adams RJ, Appleton SL, Hill CL, Ruffin RE, Wilson DH. Inadequate health literacy is associated with increased asthma morbidity in a population sample. J Allergy Clin Immunol Pract 2009;124:601–603.
27. Cegala DJ, Post DM. On addressing racial and ethnic health disparities the potential role of patient communication skills interventions. Am Behav Sci 2006;49:853–867.
28. Cegala DJ, Post DM. The impact of patients’ participation on physicians’ patient centered communication. Patient Educ Couns 2009;77:202–208.
29. Katz MG, Jacobson TA, Veledar E, Kripalani S. Patient literacy and question-asking behavior during the medical encounter: a mixed- methods analysis. J Gen Intern Med 2007;22:782–786.
30. Arthur SA, Geiser HR, Arriola KRJ, Kripalani S. Health literacy and control in the medical encounter: a mixed-methods analysis original communication. J Natl Med Assoc 2009;101:677–683.
31. Ishikawa H, Yano E. The relationship of patient participation and diabetes outcomes for patients with high vs. low health literacy. Patient Educ Couns 2011;84:393–397.
32. Kripalani S, Jacobson TA, Mugalla IC, Cawthon CR, Niesner KJ, Vaccarino V. Health literacy and the quality of physician-patient communication during hospitalization. J Hosp Med 2010;5: 269–275.
33. National Heart L, Asthma BINAEPEPotMo. Expert panel report 3: guidelines for the diagnosis and management of asthma: full report. Bethesda, MD: US Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute; 2007.
34. George M, Campbell J, Rand C. Self-management of acute asthma among low-income urban adults. J of Asthma 2009;46:618–624.
35. Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med 2005;3:514–522.
36. Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med 2004;36: 588–594.
37. Apter AJ, Wang X, Bogen D, Bennett IM, Jennings RM, Garcia L, Sharpe T, et al. Linking numeracy and asthma-related quality of life. Patient Educ Couns 2009;75:386–391.
38. Schaffer SD, Yarandi HN. Measuring asthma self-management knowledge in adults. J Am Acad Nurse Pract 2007;19:530–535.
39. Juniper EF, O’Byrne PM, Guyatt GH, Ferrie PJ, King DR. Development and validation of a questionnaire to measure asthma control. Eur Respir J 1999;14:902–907.
40. Juniper EF, Buist AS, Cox FM, Ferrie PJ, King DR. Validation of a standardized version of the Asthma Quality of Life Questionnaire. Chest 1999;115:1265–1270.
41. Nelson W, Reyna VF, Fagerlin A, Lipkus I, Peters E. Clinical implications of numeracy: theory and practice. Ann Behav Med 2008;35:261–274.
42. Reyna VF, Brainerd CJ. The importance of mathematics in health and human judgment: numeracy, risk communication, and medical decision making. Learn Individ Differ 2007;17:147–159.
43. Rothman RL, Montori VM, Cherrington A, Pignone MP. Perspective: the role of numeracy in health care. J Health Commun 2008;13:583–595.
44. Wallace LS, Rogers ES, Roskos SE, Holiday DB, Weiss BD. Brief report: screening items to identify patients with limited health literacy skills. J Gen Intern Med 2006;21:874–877.
45. Fade S. Using interpretative phenomenological analysis for public health nutrition and dietetic research: a practical guide. P Nutr Soc 2004;63:647–653.
46. Larkin M, Watts S, Clifton E. Giving voice and making sense in interpretative phenomenological analysis. Qual Res Psychol 2006; 3:102–120.
47. Smith JA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psych- ology. Psychol Health 1996;11:261–267.
48. Smith JA, Osborn M. Qualitative psychology: a practical guide to research methods. Chapter 4. Interpretative Phenomenological Analysis. London: SAGE Publications; 2003:53–80.
49. Osborn CY, Cavanaugh K, Wallston KA, Rothman RL. Self- efficacy links health literacy and numeracy to glycemic control. J Health Commun 2010;15:146–158.
50. Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, Imara M. The health care experience of patients with low literacy. Arch Fam Med 1996;5:329–334.
51. Greene J, Hibbard JH, Tusler M. How much do health literacy and patient activation contribute to older adults’ ability to manage their health? Washington, DC: AARP Public Policy Institute; 2005.
52. Apter AJ, Reisine ST, Affleck G, Barrows E, ZuWallack RL. Adherence with twice-daily dosing of inhaled steroids. Socioeconomic and health-belief differences. Am J Respir Crit Care Med 1998;157:1810–1817.
53. Parker R. Health literacy: a challenge for American patients and their health care providers. Health Promot Int 2000;15:277–283.
54. Auerbach SM. The impact on patient health outcomes of interven- tions targeting the patient-physician relationship. Patient 2009;2: 77–84.
55. Schoenthaler A, Chaplin WF, Allegrante JP, Fernandez S, Diaz-Gloster M, Tobin JN, Ogedegbe G. Provider communication effects medication adherence in hypertensive African Americans. Patient Educ Couns 2009;75:185–191.
56. Pleasant A, McKinney J, Rikard, RV. Health literacy measurement: a proposed research agenda. J Health Commun 2011;16:11–21.
57. Mancuso JM. Assessment and measurement of health literacy: an integrative review of the literature. Nurs Health Sci 2009;11:77–89.
712 C. Melton et al. J Asthma, 2014; 51(7): 703–713
Interview guide
Introduction: the purpose of this meeting with you is for you to share your thoughts, ideas and feelings about asthma and how you learn about asthma. Furthermore, I want to find out how you take care of your asthma and how you talk with your doctor about your asthma. There is no right or wrong answer to the questions I will ask you. Please stop and ask me a question at any time.
1. I will begin by asking you to think about how you have learned about asthma. How did you first learn about asthma?
2. How do you learn about asthma now? 3. What type of information do you need to take care of your
asthma? 4. Where is the best place to get information about asthma? 5. Do you have enough information to take care of your asthma? 6. Do you have the right information to take care of your asthma? 7. What helps you take care of your asthma? 8. What are some things that make it difficult for you to take care of
your asthma?
9. Do you feel you have control of your asthma? What makes you feel this way?
10. Do you feel that your asthma is out of your control? What makes you feel this way?
11. What do you feel controls your asthma? You or someone else? 12. How do you feel talking with your doctor about your asthma? 13. What does your doctor do to help you take care of your asthma? 14. Is there something else you think that your doctor could do to
help you take care of your asthma? 15. Do you think that your doctor works with you to help take care of
your asthma? 16. What should your doctor and other health providers be doing to
help you with your asthma? 17. What suggestions do you have for other patients who have asthma
to help them take care of themselves? 18. What suggestions do you have for other patients who have asthma
to help them work with their doctor?
DOI: 10.3109/02770903.2014.906605 Health literacy and asthma management 713
