Rural Appalachia: Disparities Within Disparities
|by Michelle L. Salob, ND, MPH|
For those living outside the region, rural Appalachia has historically conjured up images of poverty and despair. Eleanor Roosevelt visited the area during the New Deal era, highlighting the plight of the coal miners, but since then, there has not been much attention to an area that is stricken by poverty and unemployment. Movies like “Deliverance” have portrayed the Appalachian region as one of backward living and incestuous relationships. For decades, rural Appalachia has been relatively hidden from view, and as a consequence, the health disparities within the area have gone largely unnoticed by the general public. The resilience and determination of the people of this region has kept a small, but dedicated group of volunteers, healthcare providers and academics working in the area.
While isolated local efforts by volunteer, academic, and faith-based
groups in communities in rural Appalachia have been providing various
interventions and services, the need for more collaborative efforts exists
to strengthen local social capital. A recent media piece by Diane Sawyer
on ABC’s 20/20 has sparked somewhat of a national resurgence in interest
for the area, which will hopefully lead to the further development of
interdisciplinary and community based research and interventions to address
the health disparities of Appalachia.
Note: The Appalachian Regional Commission derives these county designations based on an index-based county economic classification system based on a comparison of county averages for three indicators (three year average unemployment rate, per capita market income, and poverty rate) with national averages. Each county is indexed and ranked into one of the following five categories: distressed, at-risk, transitional, competitive, and attainment. (2) Distressed counties rank in the bottom 10% of counties in the US, representing the most economically depressed regions in the country. At-risk counties are slightly better off than distressed, and fall within the bottom 10-25% of US counties. Transitional counties represent the median economic condition, ranking between the second and third quartiles. These counties can represent economies that are either weak becoming strong, or strong becoming weak. Competitive counties rank between the top 10-25% of US counties and are considered able to compete in the national economy. Attainment counties represent the counties in the US with the top 10% economic conditions. (2)
For the purposes of this paper, the majority of the discussion will focus on the economically disadvantaged areas of Appalachia, mainly the rural counties and concentrated most heavily in the central region. It is of note to mention that there are disparities developing within the Appalachian region itself, with areas such as the Atlanta metropolitan area gaining in economic growth, while areas in central Appalachia are increasing in poverty. These disparities, notably in educational attainment and poverty, can hide the true extent of disparate indicator variable in the region when compared as a whole to the US. (1)
By the 2000 census, the racial and ethnic composition of Appalachia
had changed considerably from the 1990 distribution, where over 90% of
the region was non-Hispanic White. The percentage of non-Hispanic Whites
had dropped by 3%, while the Hispanic population increased from 1-3%.
The vast majority of growth in racial and ethnic diversity of Appalachia
was and continues to be in urban areas, while rural areas have seen little
in the way of growth in this area. (1)
Income and Educational Status
If the data are further broken down by county, there is an even larger disparity in socioeconomic status markers in the rural counties of Appalachia as compared with the US (see figure 5), with the lowest per capita incomes found in the rural areas of central and southwest Appalachia.
Overview of Selected Health Concerns
The rural poor are at high risk for developing obesity, due to barriers to acquisition of healthy foods as well as opportunities for physical activity. Lack of transportation, sidewalks, sufficient income, social support, childcare, and time all serve as barriers to both adequate nutrition and exercise.(4) Little research has been done specifically regarding the correlates of obesity in rural adults, although given the high prevalence of poverty, they are at high risk. (3) Studies thus far have been descriptive and cross sectional in nature, with isolated small interventions aimed mainly at prevention in children.
In one study examining physical activity and obesity in rural adults (3), noted that rates of obesity in rural adults at 20.4% were notably higher than urban adults at 17.8%. This study used data gathered in the Sample Adult Prevention Module of the 1998 National Health Interview Survey (NHIS), which relies on self-report, leading to inconsistencies in data. With self report, women are generally thought to under report weight, while men over report height, both of which can lead to decrease in body mass index (BMI) score and underestimate of obesity. (4) The study does not report the response rate for the survey, nor does it report response by locality. (4) Rural areas tend to be underrepresented in survey data, due to factors such as literacy and access. Rurality was defined as metropolitan versus non metropolitan residence, and reported at the county level. This can attenuate results and fail to fully represent the breadth of rural communities (4). By lumping all “rural” areas under one umbrella, differences between rural communities may not be fully understood. There were no specific studies located which addressed rural Appalachian obesity rates in adults, which indicates that need for more community-based research in the area in order to design specific and culturally appropriate intervention strategies.
More work has been done in addressing obesity in children via research and intervention, especially on the school-based level. Children who are overweight have a 70% chance of being overweight as adults. (5) In a recent study (under the broader Child Caring Initiative) to determine the associations between obesity and hypertension among rural teenagers, a community-based strategy was utilized to gather prospective data from 1996-2005. This study was repeated cross sectional in nature with school based observations and record of weight, blood pressure, access to care (via insurance status) and socioeconomic indicators. (5) The medical data collected was observational, rather than self-report, which decreases the biases associated with recall, social desirability, and perhaps self-perception.
In a study of this nature, community based research is employed to gather data that can be the most helpful in the development of local and policy interventions. While traditional longitudinal study designs tend to be expensive, the repeated cross sectional design of this study allows for similar data to be collected without loss of statistical power, due to the adequate subject replacement of upcoming children in school. Since this design allows for introduction of new participants over time (based on progression in school) this is likely a better indicator of community health trends over time than following one cohort for several years. (5) This type of design can be repeated in schools across Appalachian counties and towns with relatively little funding and can help further elucidate disparity trends within the region.
One important factor in addressing mental health service delivery in rural Appalachia is that there is little to no community based research specific to the region. Studies have been generally limited to descriptive studies of Appalachia without comparison groups or using national data as the comparison (7). These types of studies are very limiting in the depth of data that may be gleaned. This includes lack of data concerning the availability of and access to mental health providers in the area as well as less salient reasons why mental health services are not sought. (7)
A study published in 2008 sought to examine mental health disparities in rural Appalachia by taking into consideration factors beyond access to care and numbers of providers, using a retrospective analysis of secondary county-level data to determine the variables relating to designation of counties within rural Appalachia as mental health professional shortage areas. (7) Comparisons were made between rural Appalachia and other rural areas in hopes to elucidate whether the disparities are solely a result of rural poverty, or due to more complex historical, geographical, and/or cultural influences.
One of the hypotheses of this study was that factors unique to Appalachia may have an influence on mental health care-seeking and trust of mental health providers. Appalachian culture takes great pride in self-reliance, for example, which may be a further barrier to people seeking care beyond the usual physical and economic barriers to access. (7) By using Appalachian as a variable for analysis, the study determined that this factor was significant in all models. (7) Results demonstrated that of the 268 nonmetropolitan Appalachian counties examined, 69.8% were designated as mental health professional shortage areas, as compared to 57.7% of rural non-Appalachian counties within the same states (p<.02). (7)
While this study was a good first attempt in examining barriers to mental health service provision, it was based on a secondary data analysis based largely on census data. Hypotheses were generated concerning cultural influences on mental health service seeking behavior, however were not examined within the context of the research other than the coding of “Appalachian” as a variable in modeling. From this point, community-based ethnographic studies would be helpful in determining stronger associations between mental health service provision and acquisition and specific rural Appalachian needs.
In a study of rural women and depression published in 2008, the investigators suggested that chronically poor populations may develop depression as a trait, and recommended the need for improved rural mental health care delivery combined with culturally sensitive treatment strategies. (9) Investigators also posed it that the relationship between biological manifestations and economic status to depression are circular and compounding in nature. Rural residents experiencing endemic poverty are subject to chronic stress, which contributes to altered biochemical pathways leading to depression, which in turn leads to loss of economic productivity, which reinforces poverty. (9)
One of the more alarming activities among adolescents is the increasing prevalence of inhalant use as a form of recreation (14). In 2004, 17.3% of eighth grade students in the US reported some use of inhalants in their lifetime. (15) The term inhalant is used to describe volatile substances inhaled (sometimes known as “huffing”) through the nose or mouth in order to produce inebriation and/or euphoria. Common sources include glues, gasoline, solvents, paints, acetone, and propellants. (14) Inhalants are particularly dangerous because they are inexpensive and relatively easy to obtain from the household, which puts young adolescents at risk for easy experimentation. This also allows for inhalant use among those of all economic classes, leaving the rural poor especially vulnerable. Inhalant use can cause severe medical problems, including cardiac arrest and sudden death, which can occur in infrequent or even first time users. Other medical concerns include liver, kidney, bone marrow, lung, and neurological problems, as well as exacerbation of existing psychological and social problems. (14)
A study published in 2007 sought to determine if rurality was a risk factor for inhalant use. (14) Prior studies had indicated that there was no relationship, however these studies were limited by confounding variables, sample size, and broad definition of rurality. The 2007 study design used by the investigators was created to specifically address flaws in earlier studies to capture subtleties that were not addressed. This included using data from 134 communities (large sample size) in order to reduce confounding of socioeconomic variables as well as further categorizing levels of rurality (remote, medium, and large) based on more comprehensive definitions than the typical metropolitan non-metropolitan classifications based on population and proximity to metropolitan areas. (14) The latter is especially important to elucidating the needs of communities defined as rural. By measuring the extent or degree of “remoteness”, a better sense of access to resources can be assessed. The following criteria were used to determine degree of rurality (14):
Among white students living in southeast (which includes parts of rural
Appalachia), living in remote communities, 20.5% reported using inhalants
at least once compared with 11.5% of white students living in metropolitan
areas. Rates in medium and large rural communities were slightly less
than remote communities (both around 17%), however all rural areas showed
statistically significant differences in prevalence as compared to urban
white students. Intensity of use was found to be about 30% greater in
remote communities than either urban or other rural locales. (14) Interestingly,
these results were unique to whites in the rural south east, and did
not hold true for other ethnicities or other parts of the country. (14)
This suggests that the inhalant use may be more prevalent in rural Appalachia
and requires further investigation and intervention.
Also related to cancer disparities research is the stage of diagnosis (16), access to treatment, as well as availability and utilization of screening exams. These data generally reflect access to care issues, which are central to disparities related to poverty and distance from care centers, both prominent issues in rural Appalachia. With comparison to urban dwellers, people living in rural areas of the US have been shown to be diagnosed more often at a late stage, especially in cancers of the cervix, colon, breast, and lung (16).
A descriptive study in conjunction with the Appalachia Cancer Network (a National Cancer Institute initiative that partners with academic, community, health and government agencies working to improve cancer screening services to Appalachia) published in the Journal of Rural Health in 2005 aimed to estimate rates of cancer incidence by stage of diagnosis in rural Appalachia in comparison with non rural areas of Appalachia and the US (16). This study utilized data from cancer registries of Kentucky, Pennsylvania and West Virginia, using histologically confirmed cancer cases (excluding in situ), and their corresponding date of diagnosis, primary site, and stage. Race, gender, and county of residence at the time of diagnosis were also included. (16) Data gathered from the state registries were compared with the NCI’s Surveillance Epidemiology and End Results (SEER) program for comparison, which represented approximately 14% of the US population during the same period of time. (16)
The results of the study indicated a substantially higher incidence in Appalachia of lung, colorectal, and cervical cancers, as compared with the US. For each of these cancers, the stage of diagnosis (including unstaged disease, which carries higher mortality rate) was also later than those in the comparison SEER group. The rates of lung and cervical cancer were higher in rural Appalachia, as compared with the more urban areas of Appalachia, which illustrates the common threads to all health disparities within the region, as well as to underscore the need to examine cancer risk by site. (16)
The proportion of unstaged cancers was also found to be elevated for rural Appalachia, which is likely due to lack of access to comprehensive diagnostic methods and specialty care. In rural Appalachia, distance to a cancer care center may be a barrier to receiving a definitive staging diagnosis as well as treatment. Previous studies have noted that the greater the distance the patient has to travel for cancer care, the poorer the survival rate. (16)
Like studies in other areas of rural health, the determination of rurality was done at the county level. In order to more comprehensively assess rural status related to cancer, measuring driving time and/or distance to a cancer center in combination with population (as in the inhalant study above) may have reduced or eliminated the potential bias associated with this type of classification. (16) With respect to disparities within the specific area studied (central Appalachia), it is difficult to compare staging and site variables cancer incidence among non-Whites, due to the low numbers of minorities residing in Central Appalachia. For example, having a smaller percentage of a group with higher rates of cancer and later stage diagnoses can reduce the Appalachian rate in comparison with the SEER demographic. (16)
Due to the relative homogeneity of the region of Appalachia chosen, this study provided a relatively focused approach. This would be not be representative of the entire Appalachian region, due to state-specific education programs, local risk factors (such as occupation), and healthcare access and delivery differences by state. (16) Although this limited generalizability, the focused nature of the study allowed for an approach that could generate ideas for further community study and intervention efforts.
Ascaris infections are acquired by ingestion of the eggs of the worm, via the fecal oral route, while Strongyloides are acquired through direct penetration of the skin (19), usually from walking barefoot on contaminated soil. Symptoms of Ascaris infestations are generally based on the phase of infection. After the eggs are ingested, symptoms of fever, coughing and or wheezing may occur, as the parasites travel to the lung, trachea, and pharynx where they are coughed up and swallowed into the GI tract. (19) In the later phase, worms can cause mechanical obstruction in the GI tract, appendicitis, or peritonitis. (19) Children are at greater risk for these sequelae (17). Less commonly, humans may be infected by dog, cat, or raccoon Ascaris species. This can cause visceral larva migrans, where the worms literally wander the blood stream in the human host, which may cause hepatosplenomegaly due to a strong inflammatory response (19). Many cases of Ascaris are asymptomatic, which necessitates surveillance for the parasite (17), which is easily detected by stool examination and easily treated with antihelminthic drugs (19). Prevalence had been estimated to be 14% in school children living in eastern Kentucky in the late 1970s, however, there have been no known surveys since that time. (17) Lack of surveillance and access to care may underestimate rates regardless. The endemic poverty stricken areas of Appalachia and the “cotton belt” of south bear the burden of Ascaris infection in the US. (17)
Stronglyoid infestations are more difficult to definitively diagnose, as the eggs adhere to the bowel wall and are not usually found in the stool. (19) Prevalence has been estimated to be between 1-4% in rural Appalachia (17, 20), however, due to difficulty in diagnosing this parasite, these estimates may be low. (17) This is compounded by lack of surveillance, access to care, and sometimes asymptomatic nature of infections. These infections also may mimic peptic ulcer or gall bladder disease, (19) which could also result in misclassification. Stronglyoid infections have been linked to chronic enteritis, eosinophilia impaired child development, and, in immunocompromised individuals, hyperinfection syndrome (17,19).
Eradication and control of the nematode populations in rural Appalachia requires an increase in surveillance and education, access to medical care, and improved sanitation. (17) Medication alone will not solve the problem, as reinfection is likely if the conditions that promote helmnith infestations persist. Primarily these parasitic worm infections are a result of poverty, which is the likely a major underlying cause for most of the health disparities in rural Appalachia.
While data gathered via the public health department may over represent the incidence of those of lower socioeconomic status, this is not likely to have changed the relationship between poverty level and STI acquisition. (21) Due to the lack of temporality in the exposure to poverty and the diagnosis of STI, a causal relationship cannot be assessed (21) , however those living in rural Appalachia are not likely to have been newly poor, due to the high rate of intergenerational poverty. Studies using census tract data can aid in determining the dispersion of scarce funds to target those who are most at risk for STI acquisition. (21)
The results of this study demonstrated that when distance, personal, and health characteristics are adjusted for, having a driver’s license or having a regular provider of transportation from within family or friends have significant associations with utilization of health care services. (22) Having a driver’s license was associated with a 2 fold increase in chronic care visits per year, while having a family member or friend who regularly provides transportation increases chronic care visits by 50% (22).
In this study, the median distance to care was 6.5 miles (a greater distance when compared with urban areas), which is relatively short by car, but for those who are impoverished and do not have access to a car, it is a considerable distance to walk, especially given the terrain of the foothills or if they have physical limitations. (22). The first solution that is generally considered would be to add more providers to an area, however, this would not likely solve the problem of transportation. Given that rural areas have low population density and that providers tend to cluster in towns, this would not adequately address the issue (22). Multiple offices that are open one or two days per week would also not create a viable solution, as continuity of care, hospital access, economic feasibility for providers, and arrangement for laboratory specimen collection would pose enormous obstacles. (22) Some locales have instituted mobile services in order to address the transportation problems, however these have similar limitations (22).
In the future, further research should focus on community-level transportation
decisions and barriers in order to address intervention strategies. It
is not necessarily the quality of transportation that is the issue, rather,
what the individual factors are that influence control over choices and
decisions available. Insight on the community level on how access to
transportation influences and enables consumption of healthcare is needed
for creation of interventions. (22)
Screening for breast cancer with mammography and clinical breast exams (CBE) and for cervical cancer with Papanicolau (Pap) smear at regular intervals are common practice for women living in developed countries. These secondary screening exams are utilized in order to identify cancers or dysplasias while they are asymptomatic and treatable. Historically, women in rural areas access and utilize these services at a lower rate in rural areas as compared to urban or suburban locales, often leading to diagnoses in of these cancers at later stages of disease. (23)
In a study published in Cancer in 2002, investigators researched breast and cervical cancer screening practices among rural and nonrural women using Behavioral Risk Factor Surveillance System (BRFSS) data, based on self reported mammography, clinical breast exam, and Pap smears (n=131,813). Residence was divided into the following categories: rural areas/small towns, suburban and smaller metropolitan areas, and larger metropolitan areas. (23)
Results demonstrated a statistically significant difference between rural and nonrural breast cancer screening among women. Approximately 66.7% of women residing in rural areas reported having received a mammogram in the past 2 years, as compared with 75.4% of women living in urban (larger metropolitan) areas. (23) Differences in clinical breast examinations were also significant, with 73% of rural women having reported a CBE in the past 2 years, as compared with 78.2% of urban women. Given the large samples size (n=108,326), these results are considered to be reliable. (23)
Differences in Pap smear utilization were smaller between rural and urban women, however the differences remained statistically significant. Approximately 81.3% of women living in rural areas reported receiving a Pap smear exam in the past 3 years, as compared with 84.5% of women living in urban areas. The large sample size (n=131,813) and small P value (p<.001 after a multivariate analysis) indicate reliability (23).
Use of large phone surveys can be problematic for the rural poor, as poverty may be a barrier to having a household phone, leading to selection bias. Also, this study was a national sample, which was not broken down by specific geographic region, rather by designation. Misclassification is common in these studies, due to county designation potentially obscuring rural locations. The self-reported data may also have lead to reporting bias, as validation studies have demonstrated that people tend to over-report use of screening exams and under-report time since the last screening. (23).
These large cross sectional studies are helpful to generate general hypotheses, however community-based research is necessary to determine specific barriers to screening utilization beyond the demographic variables used in these studies (such as age, education, income, etc). Community specific research is also necessary to the development and implementation of culturally-appropriate interventions to increase access and utilization of screening exams for breast and cervical cancer. (23)
Health care centers
Access to physicians in rural areas may be difficult regardless of insurance status. While about 20% of the US population lives in non metropolitan areas, only 9% of physicians practice in these areas. (25) For those who are uninsured, underinsured, or covered by Medicare/Medicaid, obtaining regular medical care is especially difficult. Community health centers (CHCs) and federally qualified health centers (FQHCs) have been providing primary health care for the past 4 decades to medically underserved populations, including low income rural residents. (24) In 2004, over 90% of the 15 million people served by CHCs and FQHCs had incomes at or below 200% of the federal poverty level (FPL), many of which were either uninsured or covered by Medicaid. (24)
A study published in the Journal of Rural Health in 2009 compared rates of uninsured emergency department visits in all 117 rural (non metropolitan) Georgia counties that have a community health center (CHC), with those rural Georgia counties without a CHC in order to gather population-based evidence of CHC presence and emergency department (ED) usage. (24) Data from 100% of ED visits in rural counties in Georgia from 2003-2005 were analyzed for patients 18-64 years old. Results revealed that rural counties with a CHC clinic site have significantly lower uninsured ED rates than those without a CHC site. Covariates thought to affect ED utilizations, such as age, sex, race, and ethnicity were controlled for. (24)
Based on the findings of this study as well as previous research, it can be concluded that CHCs have an important role in the primary care of the rural poor. These centers provide a means for cost-effective and continuity of care for rural Appalachians. CHCs and FQHCs should be contrasted with rural health clinics (RHCs), which serve to increase the number of providers in rural areas by providing incentives for primary care providers and mid level professionals to practice in these areas. These clinics are reimbursed for Medicaid and Medicare, but do not receive funds to care for the uninsured. (24) In order to provide the broadest access to primary care, community health centers in conjunction with referral networks for specialty care are needed in greater numbers in rural Appalachia.
Selected Elimination Strategies:
In 2006, The Community Health Ambassadors Program (CHAP) , a training and education program created in order to engage community leaders from across the state of North Carolina, was unveiled to help eliminate disparities. (26). The purpose of this program is to use these leaders to engage the community members to ascertain local perspectives, priorities, and possible solutions to the complex health concerns of a specific population. (26) The main goals are to increase access to existing health and social service resources, improve knowledge concerning community health concerns, and to develop a viable network of health-related resources and advocates. (26). Involved in the program are multiple healthcare professional partnerships, the community college system, and tribal, community, and faith-based organizations, including 146 community health ambassadors (CHA) from 17 counties. These health ambassadors serve as links between the community and health care networks in order to increase educational awareness, access, and utilization of healthcare and related services. In this particular case, ambassadors were used to teach community members how to monitor blood sugar and blood pressure. Other communities have used CHAs to address health concerns such as breast cancer, nutrition, HIV/STI prevention, prenatal care, and heart disease. (26) Due to the success in North Carolina, the Office of Minority Health and Health Disparities (the parent group for CHAP) has pledged to continue to sustain the program and maintain it as a community led, based, and owned model of disparity elimination. (26)
Another community based intervention that may be utilized in rural Appalachia could be the creation of sustainable healthy food sources via gardens. One such intervention was instituted in an economically depressed area that had limited access to fresh produce and high rates of obesity and related illness. This community formed a project known as “The Garden of Eden” at a local church in partnership with local academic institutions, businesses, and community members. Through this partnership, a sustainable community garden and eventually business that serves to provide a living wage to employees, as well as to subsidize fresh produce in the community. Originally funded through grants, The Garden of Eden began as a community-run program, and eventually to function as a sustainable business, selling produce to neighboring communities. (27) If employed in rural Appalachia, this intervention could substantially benefit people at the most basic level of nutrition, which could vastly improve the health of the community.
In order to encourage community-action and participation, public health interventions and collaborations should include partnerships with prior existing local foundations. By involving a trusted institution, such as the local church in community health endeavors, there is greater chance of buy-in by community members, as well as sustainability of programs. (26,28) In rural Appalachia, churches often serve as the center of small communities, offering a centralized social center, guidance, and faith to members. In remote locations, churches may be the point of entry into health and social services for congregants, especially those that are more difficult to reach. (28). Churches also tend to have access wide variety of resources (including financial, social, and intellectual), and tend to be concerned with providing services to disadvantaged populations (28).
Community based research and interventions have been utilized to address disparities in such specific health concerns as cancer (29,30) and obesity (31), in Appalachia. These efforts are important in understanding the impact of health on local populations, however, these activities tend to be isolated in nature and require further research and collaboration to gain financial and infrastructure support and spread to the policy level.
In health disparities research, rural Appalachia has been largely overlooked. This area of the US has some of the worst health outcomes, in some ways mirroring those of a developing country. One of the major underlying reasons for the disparities in the reason is the abject poverty faced by many residents of the region. The fluctuant coal market, combined with the loss of tobacco-related jobs have provided for an unreliable economy with little infrastructure in the remote areas.
While sustainable poverty solutions are necessary, this is only part of the solution. As discussed above, the research pertaining to health in rural Appalachia has been largely based on survey data and descriptive studies. Appalachia as a whole appears to be improving on many measures of health, however, when taking a closer look, it is evident that the disparity gap within the region is actually widening. Gathering state and county-level data without more comprehensive local evaluation reinforces the gaps in research. While important in generating hypotheses, these cross sectional studies require follow up with community based research practices, in order to ascertain local contributory variables.
Improving the quality and quantity of research will allow for more informed and cost effective interventions, based on the needs of each community. It is important to take the social, political, cultural, and economic contexts of rural Appalachia into consideration when seeking elimination strategies for the health disparities of the region. As public interest waxes and wanes surrounding particular health disparities, it is important to involve the community on every level to promote sustainable solutions to these complex problems.