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Volume
2:
No. 2, April 2005
ORIGINAL RESEARCH
Knowledge and Perceptions of Diabetes in an Appalachian
Population
Irene Tessaro, MA, MSN, DrPH, Shannon L. Smith, MA, Sheila Rye,
MS
Suggested citation for this article: Tessaro I, Smith SL, Rye S.
Knowledge and perceptions of diabetes in an
Appalachian population. Prev Chronic Dis [serial online] 2005 Apr [date cited]. Available from: URL: http://www.cdc.gov/pcd/issues/2005/
apr/04_0098.htm.
PEER REVIEWED
Abstract
Introduction
Qualitative research on knowledge and perceptions of diabetes is limited in
the Appalachian region, where social, economic, and behavioral risk factors put
many individuals at high risk for diabetes. The aim of this study was to gain a
culturally informed understanding of diabetes in the Appalachian region by 1)
determining cultural knowledge, beliefs, and attitudes of diabetes among those who live in the region; 2)
identifying concerns and barriers to care for those with
diabetes; and 3) determining the barriers and facilitators to
developing interventions for the prevention and early detection
of diabetes in Appalachia.
Methods
Thirteen focus groups were conducted in 16 counties in West
Virginia in 1999. Seven of the groups were composed of persons
with diabetes (n = 61), and six were composed of community members without
diabetes (n = 40). Participants included 73 women and 28 men (n = 101).
Results
Findings show that among this population there is lack of
knowledge about diabetes before and after diagnosis and little
perception that a risk of diabetes exists (unless there is a
family history of diabetes). Social interactions are negatively
affected by having diabetes, and cultural and economic barriers
to early detection and care create obstacles to the early
detection of diabetes and education of those diagnosed.
Conclusion
Public health education and community-level interventions for primary
prevention of diabetes in addition to behavior change to improve the management of diabetes
are needed to reduce the health disparities related to diabetes in West
Virginia.
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Introduction
West Virginia is a state with a disproportionately high burden
of diabetes. During the last decade, West Virginia has
consistently ranked among the highest diabetes prevalence and
diabetes-related mortality of all the United States. In 1999, West
Virginia had the third highest rate of death due to diabetes among all U.S.
states (1) and ranked second in prevalence of diabetes with
7.6% of West Virginians having diabetes (2). Obesity, the most
preventable cause of type 2 diabetes, has also been consistently
higher in West Virginia than nationally; West Virginia has the
second highest obesity rate in the nation (3).
The Appalachian region has a population with many social and
health disparities contributing to the high rates of diabetes and
obesity. High rates of poverty, low education, high unemployment,
an aging population, and limited access to health care
characterize many of the regions of Appalachia in general and
West Virginia in particular (4). West Virginia is the second most
rural state in the nation (5). Disparities in health status and
risk factors among rural residents are well documented (6). Among
all states, West Virginia has the nation’s oldest population; nearly one third of West Virginians
are older than 50 years (7).
Additionally, 50 of West Virginia’s 55 counties are designated as medically
underserved (8). Of all states, West Virginia has the fourth
highest percentage of adults aged 18 to 64 with no health care
coverage (1).
Studies show that diabetes can be prevented or delayed in
persons at high risk (primary prevention). For those with a high risk for
diabetes, the benefits of
interventions for physical activity and weight loss are clear (9,10). In the Diabetes
Prevention Program, a large randomized clinical trial of 3234
individuals at 27 centers, a lifestyle intervention (e.g., physical
activity, weight loss) was more effective than medicine in
preventing or delaying the onset of diabetes in persons at high
risk (10).
Community-wide public health interventions for physical activity and weight
loss, community resources, and environmental changes can help reduce the
morbidity and mortality from diabetes in West Virginia. Social and cultural
factors are important elements in planning health promotion programs (11).
Studies regarding the social and cultural influences on diabetes awareness and
prevention that could help inform the design of community interventions are
limited in the Appalachian region.
This paper presents data from focus group discussions with an underserved
population of largely white, rural, aging participants in West Virginia, both
those with and without diabetes. The existing qualitative research on lay
perceptions and knowledge of diabetes focus on those with diabetes. Thus, studies of
these perceptions before the onset of diabetes are also important to better
understand cultural norms and beliefs about diabetes.
This research was a project of the Appalachian
Diabetes Coalition based in West Virginia and funded by the Centers for Disease
Control and Prevention. Its aim was to gain a cultural understanding of diabetes
in the Appalachian region by 1) determining cultural knowledge, beliefs, and
attitudes about diabetes; 2) identifying concerns and barriers to care for those
with diabetes; and 3) determining the barriers and facilitators to developing
interventions for the prevention and early detection of diabetes in Appalachia.
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Methods
Data collection and sample
Thirteen focus groups were conducted in West Virginia over a five-month
period in 1999. Seven groups were composed of 61 persons with diabetes, and six
were composed of 40 community members without diabetes. All data were
self-reported.
A sample of participants from 16 counties in six regions
of the state was employed to represent all geographic areas of
West Virginia. Research participant recruitment involved three steps: 1)
designating communities for data collection, 2) identifying and involving
community leaders, and 3) publicizing the focus group project on a local level
to generate interest. Church leaders, activity and education coordinators,
clinic and hospital staff, extension agents, and diabetes educators in the selected
areas assisted with the recruitment process. Each focus group was conducted in a
central community location as determined by community leaders who helped to organize the groups in their
areas. Locations included health centers, clinics, hospital
meeting rooms, churches, and senior centers (12).
Participants included 73 women and 28 men (n = 101) with a mean
age of 59.1 years and 72.3% aged 50 or older. Participants with
diabetes were on average older (64.5 years) than those
without diabetes (53.3 years). The mean education level of all
participants was 12.2 years, ranging from third grade to a
completed master’s degree. Twenty-seven participants
(26.7%) did not complete a high school education. The mean
education level of the participants with diabetes was 11.7 years,
slightly less than the average of 12.9 years for those without
diabetes. Overall, the sample was high-school educated. Most of
the participants (94.1%) identified themselves as white,
which reflects the population of West Virginia as a whole.
According to 2000 census data, the population of West Virginia is
predominantly (95%) white (13).
The authors moderated all focus groups. Groups were tape recorded, and a
research assistant was present to take notes. Incentives to participants
included health education print materials, a certified diabetes educator or
health professional from the community to answer questions after the focus
groups, and $25 to cover their time and transportation costs. The Institutional
Review Board at West Virginia University approved the study.
Discussion questions were based on the explanatory model of illness (14),
social learning theory (15), the health belief model (16), and social support
theory (17). The discussion guide format elicited perspectives on diabetes and
its management, including cultural knowledge, attitudes and beliefs about
diabetes, prevention issues, early detection and health-seeking behavior,
diabetes care issues, community health concerns, and information-seeking (Appendix).
For those who did not have diabetes, the discussion guide was adjusted slightly
to elicit general information helpful in interpreting cultural norms and
attitudes about the disease. A brief eight-question survey was distributed at
the beginning of each focus group to profile the participants demographically
and assess the perception of risk of developing diabetes among participants from
the general population.
Data analysis
Focus group discussions were transcribed and verified with the
handwritten notes. Transcripts were reviewed and imported into
NUD*IST, a computer software package for qualitative data
analysis (QSR International, Melbourne, Australia) (18). Qualitative methods were used to analyze data
(19). Analysis began by coding the responses of the participants
according to their contexts and relevance to the research
question. Patterns arose during the systematic coding process,
and themes were then determined by the researchers according to
concepts and issues the participants emphasized repeatedly within
groups and between groups. These themes are presented and
illustrated with quotations from focus group participants. All
quotations are taken from participants with diabetes unless [G]
is indicated, in which case the quotation was provided by a
general population participant without diabetes.
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Results
Cultural beliefs and perceived susceptibility
Heredity, obesity, and physical inactivity were all recognized
as risk factors for diabetes, with heredity often being mentioned
in combination with another cause. Those with and without
diabetes said that the disease most likely developed from
inactivity (laziness) and lack of self-discipline (eating too
much sugar). Because of these beliefs, blame and guilt were often
associated with the diabetes diagnosis, along with a perception that
diabetes was self-induced. Those with diabetes often recounted a
specific period or event in their lives that they attributed to
the development of the disease. Accounts of periods of inactivity
and weight gain, pregnancy, stress, or a time where specific
sugary foods were eaten were recalled. Respondents with the
disease thought they could accurately identify their individual
causes; however, without the classic risk factors of diabetes — overweight, a
sedentary lifestyle, and particularly heredity — many discussants could not
understand how they developed diabetes or why others with these risk factors did
not have diabetes: “As far as I know, I'm the only one that had diabetes. None
of my real blood kin has it. So why did I get it?”
A common belief about heredity was that diabetes only strikes every
other generation of a family. Some participants felt that this was true for them
or had heard about this happening to others: “Ours is hereditary, but it skips a
generation. Not everybody gets it.”
Through a short survey, participants in the general population (i.e., those
without diabetes)
focus groups were asked about their perceptions of risk of
acquiring diabetes. As the Table shows,
more than one third (35.9%) of
participants did not know their risk. Almost half of those who
had a family history of diabetes felt they were at high risk for
developing diabetes, and no respondents without a family history
of diabetes felt they were at high risk. Half of those without a
family history of diabetes did not know their risk; the other
half considered they were at small or average risk.
Barriers to early detection
The inability to recognize symptoms of diabetes was cited as a major barrier
to early detection and diagnosis. Participants generally perceived that if there
were no recognizable symptoms, there was no need to go to a doctor or to think
they were at risk. Not going to doctors was often mentioned as a barrier to
early detection: “There is a lot of people that just never go to the
doctor. . . . They were raised that way.”
Participants felt that a lot of people did not want to know they had
diabetes, particularly because it put a burden on the family. Transportation and
inability to afford care were issues mentioned as general barriers to seeking
care. For West Virginians, this is especially problematic because this state is
the second most rural in the nation, with one of the lowest per capita incomes
of all states: “I would say in a lot of rural areas, you have a lot of people
who have an inability to go from point A to point B, just actually not being
able to get there, period.” [G]
Diabetes was considered a burdensome disease by most, a
condition to be feared with severe complications. Some felt this
fear was why people did not go to the doctor; people did not want
to burden their family with their diabetes. There was also fear of the
consequences of diabetes, especially amputation and blindness, as
in the following example: “I think it’s worse than cancer.
I put it higher than cancer. Because it is long term. It’s a slow
process of dying. Where cancer seems to be more quick. . .where
cancer, I hate to say it, it’s not short and sweet. It’s just
short.” [G]
Knowledge about diabetes
Participants from the general population knew very little
about diabetes, and those with diabetes knew little before
diagnosis. Unless there was a family member with diabetes, there
was little reason to be concerned or to have to know about
diabetes. Most participants with diabetes never recognized
symptoms before diagnosis and were diagnosed when under care for
another health problem or on a routine visit.
Once diagnosed, participants reported they received little information from
professionals to help
them deal with the disease. They lacked knowledge in many areas — diet, physical
activity, and resource information. Participants created alternative approaches
to self-management according to their acquired knowledge about diabetes, which
frequently appeared to be incorrect or incomplete. Participants felt they had
caused the disease themselves, so the responsibility for controlling the disease
fell heavily on them.
Participants consistently mentioned as issues lack of education by physicians about diabetes and lack of
time spent with clients by physicians. They felt doctors knew little about
nutrition, tended to prescribe medicine almost exclusively, and
assumed people had money to pay for equipment, such as test
strips. Additionally, they felt like they were being rushed and often forgot
what they wanted to ask about their diabetes. Doctors did not usually explain
what prescribed medicine was for or what the side effects could be.
The cost of care was another major concern for individuals with diabetes. Many felt
physicians did not understand or were unwilling to deal with cost issues:
“There is lots of things I have go wrong that I need to tell the
doctor. But I know that I can’t go out here and pay for all these tests, so I
will keep it to myself. I don’t even tell him because I know he’s going to want
extensive blood work of this or that and I don’t do it, so I keep it to myself.”
“I told my doctor the same thing. If you do not give me
my medicine, there is no way I can afford the medicine. I will
just have to die early I reckon.”
Participants with diabetes wanted more information about their
condition but often did not know where to go to get it.
Dietitians and diabetes educators offered information when they
were available. However, few diabetes educators or
nutritionists are located in West Virginia, particularly in rural areas.
Participants felt few affordable health professionals
or educational programs could give them the
information they needed to deal with their diabetes. Some
participants sought information from members of their social
networks, the pharmacy, or the health department. Many relied on
magazines for new information. Almost all had access to a general practitioner,
but few to diabetes specialists.
Although persons with diabetes seemed to recognize the
relationship between physical activity and blood glucose control, very little discussion
of actual exercise behaviors generated around it. Lack of energy from diabetes, the
cost associated with exercise because of the need to check blood
levels before and after exercise, and lack of community resources
were cited as barriers to exercise: “There again is a
vicious circle because the more you sit around, the fatter you
get. You eat and you sit some more and you just keep going in the
circle.” Although weight loss was readily identified as a
means of controlling the disease, the focus remained on methods
other than physical activity, such as a reduced-calorie or reduced-fat
diet.
Social relationships
Participants with diabetes discussed the effect the disease had on their
social relationships. Because of certain beliefs related to diabetes causation,
particularly laziness and eating too much of the wrong foods, diabetes was
perceived as a self-induced disease. The stigma associated with a disease perceived as
self-induced and not under control, along with the perception that others feel
the same way, led to participants’ concern that others treated them differently.
They also expressed feeling depressed because others did not understand how diabetes was affecting them. Having support from others with diabetes who are
dealing with similar issues was mentioned by participants as something that could help them cope with diabetes.
Furthermore, a number of participants expressed that others may not really
think they are sick because they do not look sick:
“You know, I think part of the reason people think that
way is because we do look healthy. I mean, we don’t look any
different. You can’t see any problem that we have. Diabetes is
usually a slow acting disease. You know it takes years and years
before you see anything bad come from it.”
The effect of diabetes on social relationships was not limited
to those with diabetes. Participants from the general population
focus groups felt that at times they did treat persons with
diabetes differently:
“You find yourself getting short tempered. You get
irritated real easy sometimes. You get irritated with other
people because they have to eat on time; they take their shots.
You get into a restaurant and here they’ve taken their meds
waiting on their food because it has to be in their blood system
for at least 30 minutes. They’re just taking their time. Yeah,
you get irritated [with a person with diabetes].” [G]
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Discussion
This qualitative research was conducted to gain insight into the cultural
understandings surrounding diabetes in West Virginia. Participants lacked knowledge
about diabetes before and after diagnosis and had little perception of risk of
diabetes other than a family history of diabetes. Social interactions were
reported to be negatively affected by having diabetes, and cultural and economic
barriers to early detection and care create obstacles to the early detection of
diabetes and education once diagnosed.
Poverty is an integral component of West Virginian culture, and economic
circumstances dictate many behaviors. In a resource-poor area such as West
Virginia, individuals adopt creative strategies for coping with diabetes because
they lack access or have only limited access to diabetes education, health care,
health care providers with knowledge to educate patients about diabetes and its
management, exercise facilities, and the types of
food needed (20). Decisions about early detection of diabetes and
care-seeking are frequently made from the integration of cultural
values with the pervading poverty. Socioeconomic factors appear to be
major influences on health-related decision making, creating
disparities in the diagnosis and treatment of diabetes in this
Appalachian sample.
Our focus groups found that the health care system provided little information
to persons diagnosed with diabetes, making it difficult for
those persons to find affordable education to manage diabetes. Participants reported that
their physicians knew little about the disease. Those with diabetes lacked
knowledge about diet, physical activity, and resource information. It was clear from the focus
groups that persons with diabetes needed information tailored to their
individual needs, whether it be medication, health behavior change, or coping
with a diagnosis of diabetes.
Because of its chronic nature, diabetes requires daily
management to control blood glucose levels, including a dietary
regimen, regular exercise, routine monitoring of blood glucose
levels, regular physician office visits, and for some, daily
hypoglycemic agents. A person with diabetes adjusts and adapts to
these modifications and restrictions within the framework of his
or her cultural influences, economic circumstances, knowledge,
and resources, regardless of clinical recommendations (21).
Because the concerns of the patient and practitioner surrounding
illness and treatment often differ, discord between clinical and
lay models is often medically labeled as nonadherence (22,23).
What is medically labeled as nonadherent behavior, however,
is often a common-sense adaptation for the patient from within
his or her belief framework, cultural context, and outside
influences, such as financial constraints, limited knowledge, and
lack of availability of appropriate medical care and/or
facilities. Without knowledge about their disease, nutritional
education, and access to affordable and/or appropriate items,
people often rely on information that is partial,
outdated, or incorrect (23). If persons are not satisfied with
the information they are receiving from their health care
providers, they will seek alternative sources to help them manage
their disease. In short, lack of knowledge and high costs hamper
preventive health behaviors in rural Appalachia (24).
The stigma associated with diabetes because of self-blame has
been shown to negatively affect social relationships. Cohen et al (21)
found that managing diabetes was a major obstacle to social
relationships, contributing to such events as divorce, loss of jobs,
sexual problems, and infertility. Maclean (22) found that those
with diabetes were very concerned about how others would treat
them once they discovered they had diabetes, so they avoided
situations in which they were likely to be treated differently.
The current study found that while those with diabetes did not
want to be treated differently, they also felt others did not
understand what they were going through. Stigma is a social
label, defined within a cultural context, that changes the way
individuals view themselves and are viewed by others (25).
Persons with diabetes are “blamed” for their disease because of
the perception of responsibility both on the part of those with
and without diabetes. It is not surprising, then, that support
from others with diabetes who were dealing with similar issues was
repeatedly brought up as an important strategy for change in
these focus groups.
Implications for public health
Several findings of this study point to the need for more
public health education and community-level interventions for
primary prevention of diabetes and behavior change to improve the
management of diabetes and to reduce the health disparities related
to diabetes in West Virginia. Primary prevention of diabetes is
becoming more important because of findings from the lifestyle
modification prevention trials (26). Health promotion programs
that combine both behavioral and social and physical
environmental change strategies can provide a more comprehensive
approach to addressing diabetes (27). Several behavioral and
environmental intervention strategies have the potential for the
primary prevention of diabetes in addition to behavioral change for
those with diabetes in rural West Virginia. Health communications that address a person’s unique
situation and personal characteristics have been shown effective
for changing health behaviors for a variety of health issues and
populations (28). Social network interventions, such as lay or
natural helpers, build on the naturally existing sources of
social and community support to diffuse health information and
provide support for behavioral and social change (29). For those
with diabetes, support and health information, through formal or
informal groups, can be beneficial (30). Group medical visits
have been suggested for some chronic diseases and could be an
effective strategy to provide support as well as education and
disease management (31).
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Acknowledgments
This research was supported by grant U48/CCU310821 from the
Centers for Disease Control and Prevention awarded to the
Appalachian Diabetes Coalition of the Prevention Research Center
of West Virginia University, Morgantown, WVa.
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Author Information
Corresponding Author: Irene Tessaro, MA, MSN, DrPH,
Department of Health Promotion and Risk Reduction, Community
Health Initiatives, PO Box 6275, School of Nursing, West Virginia
University, Morgantown, WV 26506. Telephone: 304-293-5582.
E-mail: itessaro@hsc.wvu.edu.
Author Affiliations: Shannon L. Smith, MA, Department of Public
Health Sciences, Wake Forest University School of Medicine,
Winston-Salem, NC; Sheila Rye, MS, Department of Health Promotion
and Risk Reduction, School of Nursing, West Virginia University,
Morgantown, WVa.
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