History

In 1749, Thomas Walker was the first known European American to penetrate the Appalachian maze of hogback ridges and deep valleys. Some 20 years later Daniel Boone blazed the Wilderness Trail through the Cumberland Gap, soon to be followed by more than 100,000 settlers ( ; ). The forefathers of the new settlers came from Northern European countries such as England, Wales, Scotland, Germany, and France, often seeking religious or personal freedom and available land ( ; ). Life in the rural wilderness areas and the continuing isolation of Appalachians, particularly the central and southern mountaineers, has distinguished Appalachians from the mainstream of American society ( ; ).

Historically, like many ethnic groups, Appalachians have borne the brunt of discriminatory characterizations. As with much labeling of minority groups, this stereotyping has emphasized negative behaviors and serves as a barrier to our understanding the health needs, core values, beliefs, and behaviors that the Anglo-Celtic rural mountain-dwelling people may share. This holds true not only for those who live in Appalachia but also for the approximately 4 million Appalachian people who migrated to major urban areas of the North Central United States beginning in the late 1950s and peaking in the 1980s ( ). Early migrants from the Appalachian region to urban areas such as Cincinnati, Columbus, Detroit, and Cleveland often remained at the poverty level and often congregated with other persons from Appalachia ( ; ); more recently, they continue to be absorbed into working- and middle-class neighborhoods because of their increased access to employment and education.

Economy

Historically, Appalachia was a rural, agricultural area. Then, beginning in the late 1800s, the economic base and the landscape were changed by the dominant industries of mining, lumber, and textiles. The local communities were often not advantaged by these industries. Generally, the wealth that was generated was not reinvested in the region but exported to the urban areas, largely in the East. This resulted in a low tax base and high rates of poverty ( ; ). Often there was corporate ownership of the resource-rich land; in some counties in West Virginia, coal companies and railroads own up to 90% of the surface land. As a result, much of the usable land was unavailable to the local Appalachians. In addition, health services, schools, and other public services were underfunded because of the lack of a solid tax base (resulting from incentives given to the corporations) ( ).

In general, rural populations across the United States tend to be poorer, older, less educated, and more likely to be uninsured. Rural residents generally have poorer overall health status, less access to care, and difficulty with paying for services (even if they have insurance), and they participate in fewer health promotion activities ( ; ; ; ; ). In contrast, metropolitan areas have more public utilities and better health infrastructure, the population is generally better educated, and more are employed at higher paying jobs ( ).

In 2013, the per capita income of those persons residing in the federally defined Appalachian regions was approximately $4000 less than the per capita income for the rest of the general United States ( ). Yet taken at face value, these figures are somewhat misleading. Appalachia is characterized by extremes of wealth and poverty. Because the per capita income is slightly lower than the national average, the poverty rate is at least twice the national average at 15.4%. In 2013, the unemployment figure for persons identified as rural Appalachian was 8.1% compared with 6.7% for the rest of the general U.S. population ( ; ; ; ). With increasing environmental concerns and international competition, there has been a loss of mining and textile jobs.

Education

In 1970, the proportion of the adult population that completed high school in the Appalachian region was 27% in the rural areas and 52% in the metropolitan areas; by 2000, this proportion had risen to 53% and 79%, respectively ( ). Currently, in all of Appalachia, 11.4% of persons 25 years of age or older have less than an eighth-grade education; 35.4% have some high school education but no diploma; 84.6% hold a high school diploma or general equivalency diploma (GED); and 21.7% hold a 4-year college degree or higher ( ). Although more Appalachian children now graduate from high school, the 17% dropout rate is still higher than that for children of other ethnic groups ( ; ; ). Although education is increasingly seen as important, school attendance may also tax a family’s meager resources. noted that the need for new clothing, transportation, homework, and peer conflicts placed additional burdens on many families.

Public Services

In the 1960s, 39% of persons in all of Appalachia (and 63% in rural areas) lived in houses without complete indoor plumbing, yet by 1990, this figure had transitioned to only 2%. Even in the rural areas of Central Appalachia, only 5% of homes today are without complete indoor plumbing ( ). Yet according to the Bureau of the Census ( ; ; ), nearly 630,000 occupied households in Appalachia lack complete plumbing facilities, which means that they are without one or more of the following: a toilet, a tub or shower, or running water. Similarly, the proportion of households with telephones has now risen, so that only 10% to 15% of occupied housing units currently lack phones ( ). In Central Appalachia, 14% of occupied homes do not have a vehicle or any available means of public transportation ( ).

Core Cultural Patterns

Four interacting core cultural patterns provide the underlying structure of much that will be discussed throughout this chapter, but first, two caveats: the intention here is not to provide a rigid stereotype of Appalachians but to identify patterns that may serve as guides to understanding. Furthermore, cultural value patterns are identified for aggregates and, as such, are not directly transferable to individuals ( ; ). Rather, these patterns provide a contextual understanding by which health care providers may assess an individual’s unique health care abilities and needs.

In the classic work of , four interacting Appalachian cultural patterns were identified: independence, the ethic of neutrality, familism, and personalism. Independence developed out of a history of escaping religious persecution and as a survival mechanism. There is a pride in self-sufficiency ( ). At a time when most people hire others to fix their cars or build their homes, Appalachians take pride in doing things for themselves. This helps explain the difficulty encountered by many Appalachians when it is necessary to ask for financial help or welfare. However, this pattern is context specific and may not apply in unfamiliar clinical settings, particularly in a crisis. For example, while Appalachian nurses wanted to promote more decisional control for hospitalized patients, Appalachian patients reported a desire for much less control ( ). found that interdependence, not independence, characterized rural Southern Appalachian family members who had a member in the intensive care unit. Other rural Appalachian family member needs that were different from urban families included a preference for informal support systems (family, friends, and religion) over formal systems, close personal relationships and a desire for frequent communication with professionals, flexible visiting hours, permission for emotions, and provision for time alone.

In his early ethnographic work, reported that Appalachians demonstrate what he termed an ethic of neutrality. This is evidenced in four behavioral imperatives: (1) avoiding aggression or assertiveness, (2) not interfering in another person’s business unless requested to do so, (3) avoiding domination over other people, and (4) avoiding arguments and seeking agreement. Consequently, there may be low tolerance for paternalistic or prescriptive behavior patterns. Rather than messages attacking an organization or individual, politeness is valued ( ). For example, according to , an occupational therapist and native of Appalachia, “It is more important to get along with others than to make conflicting true feelings known” (p. 62).

Familism emphasizes the importance of relationships with consanguineous nuclear and extended family members rather than self-actualization through individual accomplishments ( ). The high reliance on family may influence choice of employment, religious affiliation, marriage partners, and health care practices. A sense of family is central to the Appalachian sense of self, which in turn is intricately linked with the land, homestead, and trusted neighbors ( ; ). Appalachians who have migrated elsewhere often strongly continue to value their connection to the “hills” and homeland and go to great lengths to maintain those connections ( ).

While trust is extended cautiously, it may be built through a personal orientation in contrast to a bu­reaucratic or service-oriented relationship ( ). In health interactions, a person-focused rather than disease-focused approach is preferred. This preference for a personal orientation may explain why nursing care has been noted to be preferred to medical-based cure modalities ( ).

Implications for Nursing Care

As the textile, mining, and lumber industries began to grow in the Appalachian regions, many Appalachian persons were stripped of their land and other natural resources. Company towns controlled the stores, educational systems, and financial capital, exploiting the people and the land. This historical context fostered mistrust of outsiders. Positive interactions between an Appalachian person and an outsider often require that a trusting relationship first be established. Strategies to improve communication include making the time to listen and talk about matters that are important to the individual and the family. It may be helpful to use a direct approach, giving the facts, discussing within the context of prior family experiences, and soliciting the opinion and advice of family members before making recommendations.

Again, the nurse should be aware that some Appalachians, because of the ethic of neutrality, might wish to avoid confrontation and tell nurses what they believe the nurse wants to hear. The nurse can diminish this possibility by adopting a high-context communication style: speaking indirectly, emphasizing collaboration, avoiding confrontation, and developing the relationship ( ; ). Finally, because many Appalachian folk illnesses sound like biomedical disease categories, nurses need to take special care to understand what clients truly mean in their use of illness categories.

Implications for Nursing Care

In contrast to the typical behavioral characteristics of Appalachians, which is to be family oriented and concerned with the well-being of others, when an Appalachian is ill, personal space collapses inwardly ( ), meaning that the Appalachian person expects to be waited on and cared for by others. Thus the focus of both the individual and the members of the family is on the ill person. In a hospital setting, this may create obstacles to planning and executing nursing care because it is not unusual for a large number of family members to arrive with the client and to expect to maintain proximity with the client throughout the duration of the hospitalization. This desire for proximity is also evidenced when a client is scheduled for a clinic appointment, even if the condition is perceived by the health care professionals as minor.

Family

The major unit of Appalachian social organization and group identity is generally the family rather than the community or Appalachian region ( ; ). The nuclear and extended families are both very important. Some Appalachians are so intensely loyal that they feel a personal responsibility for in-laws, nieces, and nephews, as well as other distant family members. Appalachians tend to place a greater importance on the extended family than do most middle-class Americans; the extended family is considered important regardless of the social, educational, or economic level of the individual. Thus relatives are sought for advice, validation, and support on many matters, particularly those pertaining to health and illness ( ; ). Kinship groups are the major social organizing force in the region ( ) on which to build community-level involvement. The dedication to family is of such paramount importance to most Appalachians that note most Appalachians rarely move more than 30 miles from their families.

The extensive ties to the nuclear and extended family are evident when a family member becomes ill or dies, in that members of the entire family may take leave from their jobs to be with the ill or dying relative for the duration of the crisis. This tendency to miss work for a family illness may have negative job consequences. If a family member is chronically ill, continued employment may be sacrificed for the “good” of the family ( ). This intense loyalty for being with ill family members may remain long after an Appalachian person migrates from the region ( ). This loyalty is also carried over into housing in northern areas; a landlord may find a property deserted, with all personal belongings intact, because the tenant had returned to the Appalachian region to be with a sick relative.

The Appalachian family is basically patriarchal ( ; ), but mothers and grandmothers make most health decisions ( ). conducted three ethnographic studies over a 5-year period in two southeastern Ohio counties. She found that most families focused on present rather than future health. The concept of “family health routines” involves multiple interacting individuals that constitute a family perspective. She notes that for the Appalachian families studied, mothers assume primary roles in establishing the behaviors viewed as important for children’s health needs. Mothers are the main health care teachers and decision makers and are pragmatic in caring for family health. For example, mothers are more likely to encourage family members to incorporate health information into family routines when it is viewed as meaningful, aligned with family values, and applicable to members’ needs and when adequate resources or supports are available ( ). Determination of need for medical care was made after a “wait and see” time period, upon the counsel of close friends and family, and based on the mother’s judgment ( ).

Children are viewed as security for the future ( ). While marriage before childbirth is preferred, in the case of an early pregnancy, the family tends to become more cohesive, providing love and security to the expectant mother. The grandparents often care for grandchildren, particularly if both parents work. The children appear to have a sense of who they are and a greater sense of belonging. The desired family size has decreased dramatically; the norm is now two to three children ( ; ).

Elderly family members are generally respected and often reside with their children or nearby. The attitude among Appalachians toward elders is reported to be one of honor, attributable to the elders’ role in cultural transmission to later generations. found that spatial separation of elders from their adult children when they relocated generated critical dilemmas for the Appalachian elders. It was difficult to reconcile their fear of leaving the familiar environment (with its physical, social, and emotional support) with their desire to be close to the family. The study was based on a 4-year observation of elderly persons in a rural northern Appalachian community and was intended primarily to explore the tensions between factors that reinforced locational stability and factors that encouraged relocating to the homes of children residing outside the Appalachian region.

Religion

Initially on arrival in the United States, many Appalachian persons were Presbyterians, Episcopalians, or members of some other formally organized denomination. However, these churches required educated clergy and a centralized organization, both of which proved to be impractical in the wilderness ( ). As a result, in rural areas locally autonomous nondenominational churches emerged throughout the Appalachian region. For the most part, these individualistic churches stress the centrality of grace, authority of the Bible, religious experience, a call to preach, and local church governance ( ). Whereas some social reformers have viewed the local churches as a hindrance to social progress, others recognize their adaptive features, making life worth living in grim situations ( ). Mainstream denominations, particularly Southern Baptist and United Methodist, are more prevalent in the urban areas of Appalachia and generally attended by more economically advantaged congregations.

explored health-related and religious activities in the local autonomous churches to include prayer requests, anointing, and testimony. They proposed that religious health partnerships could provide a channel for health promotion effects in rural Appalachia. On the other hand, churches differ in their willingness to engage in progress that is “of the world” and not inspired by God.

Implications for Nursing Care

Rather than an individualist experience, health and illness are a family affair, negotiated and understood within a family context and often under the purview of women, especially mothers. In health care, family members’ involvement may include consultation regarding etiology, severity, and treatment options. Integration of concrete examples of risk behavior, health problems, and treatments within the experiences of the nuclear and extended family system may be an effective health care strategy for providers ( ).

In contrast to the well Appalachians’ emphasis on independence, ill Appalachian interdependence is emphasized. The family surrounds the person and often provides needed care ( ; ). In a hospital or clinic setting, it is not unusual for a large number of family members to arrive with the client and expect to maintain proximity with the client throughout the duration of the hospitalization. Consequently, mechanisms for family involvement need to be incorporated into the plan of care and hospital policies.

Familism, the ethic of neutrality, and poverty may influence health behaviors. Because Appalachians tend to be family oriented, it may be important to elicit family opinions in regard to health care. If the family’s ideas and opinions are not incorporated into the plan of care, the family and client may not accept the health care recommendations or services. It may be helpful to blend the informal and formal systems ( ) or recruit family members or other trusted care providers as care brokers.

It may be helpful to develop mechanisms for supporting and encouraging family involvement in care ( ; ). Minimally, the nurse must recognize that changes in health behaviors affect the entire family system, and consequently the nurse should incorporate family members in health education. For example, if a person is admitted to the hospital for diabetes, not only should the client be given instructions on diabetes care, but the family members should also be given the same level of instruction. Instruction must take into account the resources the family has in the home, including the informal care network and assets such as running water, finances to purchase supplies, and refrigeration.

In addition, since the family context, health beliefs, practices, and religion are often intertwined, it is important that an assessment of these be done on admission to the health care system. For example, a study done with Appalachian women found that premature birth is associated with a woman’s negative feelings about pregnancy, low self-esteem, and depression ( ). On the other hand, Appalachian pregnant women who had a greater sense of spirituality and lower levels of personal stress were found to participate in fewer risky health behaviors (e.g., smoking) ( ). As such, integrating stress reduction and spirituality in prenatal health care promotion visits may be helpful. This may be particularly important for Medicaid-supported pregnant women who were found to have an increased incidence of smoking, depressive symptoms, and physical abuse compared with private-pay pregnant women ( ). Confusion regarding professional stereotyping of fatalism for clients’ lack of personal resources of time, money, or access to health care beliefs must be recognized and avoided. Finally, church–health partnerships may be useful in the delivery of health promotion information.

Implications for Nursing Care

Because of Appalachians’ perspectives on time, they may live at a pace that facilitates an awareness of body rhythms as opposed to clock time. Because some Appalachians are present-time oriented, it is best and often necessary for the nurse to assess kinesthetic needs and gently access personal and emotional space by visiting with the client before an examination or treatment is performed. Another consideration is that it is common for some Appalachian clients to arrive for an appointment at a time that is different from when the appointment is scheduled. If they are turned away, they may not access those services again. There are a number of alternative methods for delivery of health services that are being explored and tested. Modes of health care delivery to facilitate community-level and client access to health care include family involvement in care planning, teleconferencing and telehealth, assistance with transportation, flexible scheduling and extended clinic hours, open walk-in clinics, outreach clinics close to clients’ homes, home visits, parish nursing, and clinics done in association with churches and other sites of congregation ( ; ; ; ; ; ; ).

Environmental Health Threats

Factors contributing to the Appalachians’ having health status lower than the U.S. average include low-paying jobs, lack of employment, lack of health insurance, environ­mental toxins, noise, and numerous occupational health hazards. Workers in the textile mills were often exposed to high levels of cotton, flax, or hemp dust, leading to the highest rates of “brown lung disease” in the country. Brown lung disease, or byssinosis, is irreversible and characterized by shortness of breath, coughing, and wheezing ( ). Analogously, between 1950 and 1970, the mines were locations where “black choking death was accepted as normal and inevitable” ( , p. 145). The high-impact machines created inches of dust on the tunnel floors that covered the miners’ bodies. Lung disease incapacitated the miners. Black lung disease (pneumoconiosis) is a progressive incurable condition that is characterized by extreme shortness of breath. In addition, approximately 90% of coal miners over the age of 54 report hearing problems ( ). Although coal miners identified that hearing loss is a serious concern and voiced the importance of protective devices, they also reported a greater need for unencumbered hearing while in the mine. It was perceived to be important to remain aware of “roof talk,” or noises that warn of the mine ceiling caving in ( , p. 748). In addition to decreasing noise from the machinery, miners recommended that information be given to miners about decibel noise exposure throughout the mine, ongoing hearing screening services, and public campaigns to increase awareness about the problems and need for prevention to decrease hearing loss.

Death, Dying, and Death Rituals

While there is increasing and considerable diversity, Appalachian death rituals have been well characterized by and . When death is imminent, a vigil sometimes called a “death watch” is held by family and friends either in the home or, more commonly today, in the hospital. Participants in the vigil often observe for signs of impending death, such as premonitions, visions, and the death rattle. Usually the evening before the funeral, a wake or visitation period is often held at a funeral home or church; this is a time for paying respects to the dead and his or her family and to view the deceased. Funeral services are generally held in funeral homes or churches; these often include prayer, music, scriptural reading, and a sermon or eulogy. Following the funeral service, close mourners may proceed to the site of interment—sometimes on foot, but more often by car. Today, graves are typically dug by service workers rather than friends. Before the casket is lowered, ministers may preside over a committal service. Graves are often marked with headstones with chiseled writing (name, birth and death dates, and sometimes an epitaph) and sometimes a picture ( ; ).

Barriers to Care

Lack of available services; ethnocentric providers; difficult terrain; geographic isolation; cost; and lack of transportation, insurance, and telephones are common barriers to utilization of health care services by Appalachians ( ; ; ; ).

In rural areas of Appalachia, 67% of the counties are federally designated shortage areas; the proportion of primary care physicians per population is less than half that in the rest of the United States ( ; ). Rural clinic offices are often staffed by single providers with no laboratory support ( ). In one study, most family members indicated they were unable to access primary care physicians because few providers accepted medical cards (Medicaid/Medicare) as payment; further, 80% had no or unreliable transportation ( ). In addition, the ethnocentrism of many providers and the higher proportion of foreign-trained physicians in underserved areas may deter Appalachians from returning for services ( ).

Locus of Control

Appalachians’ locus of control has been characterized as fatalistic, with strong roots in fundamentalist religion. Many Appalachians believe that God has control over their lives and that however things turn out, it is the “Lord’s will.” While most middle-class Americans believe that science can most often control events and health, many Appalachians do not believe that they have control over their future or their health. However, this idea of fatalism is more complex than usually described and may not be related to lack of health efforts. Several studies report that while Appalachians may believe they cannot prevent an illness, they have strong self-determination about coping with and managing an illness ( ; ; ; ). This has been termed by as “adaptive acceptance” (p. 456). This interpretation fits well with other research indicating a strong sense of self-reliance and inner strength among Appalachians ( ).

While Appalachians may not believe they are capable of maintaining their health without God’s help, many believe they may be to blame for many chronic illnesses (such as diabetes). documented that diabetes is often perceived by Appalachians as a self-induced illness, indicating a moral weakness and brought on by “laziness and lack of self discipline” (p. 295). Sometimes, if they believe that nothing can be done about a serious health condition, Appalachians may prefer not to be told the diagnosis ( ). Finally, when hospitalized, Appalachian patients may desire less decisional control than what nurses view as ideal (notably, in this study, physicians and patients preferred about the same level of patient decisional control) ( ).

In addition, we see variations in reports related to the coping styles of the Appalachians when confronted with critical illnesses of family members. In a study of the critical care coping styles of 30 family members of critically ill patients in two rural Appalachian hospitals, dominant coping styles were supportive, optimistic, confrontational, and self-reliant, with fatalism and evasive styles being ranked much lower ( ). Supportive strategies emphasizing the importance of close personal contacts were key. Action-focused coping centered on seeking information about the problem, handling things one step at a time, and keeping busy.

In contrast to middle-class America’s “doing” activity orientation, Appalachians are considered “being” oriented, which means they focus more on interpersonal relationships than on personal accomplishments. In contrast with middle-class individualistic emphasis, Appalachian culture emphasizes the lineal-collateral orientation, indicating that an individual’s most significant relationships are with family-related groups, kinship groups, or close neighbors. Many middle-class Americans seek self-actualization through individual accomplishments and autonomously set goals, whereas Appalachians tend to seek fulfillment through kin and neighbor interactions.

The “being” and lineal-collateral orientations, coupled with the present-time orientation, may influence health care practices, promoting a reactive rather than proactive stance. A nurse’s initial encounter with an Appalachian client may be an emergency situation, such as a birth.

Appalachian Folk Health System

The Appalachian folk health system encompasses traditional beliefs about how to maintain health; the definition, nature, cause, and treatment of illnesses; traditional remedies; and lay health specialists. Again, many of these elements are in transition.

Knowledge of Biomedical Diseases

The level of biomedical health information and knowledge, particularly in rural Central Appalachia, is often very low ( ). There may be little knowledge of the biomedical explanations for how persons become ill, the complication of pregnancy, or how to prevent cardiovascular illness or diabetes. This unfamiliarity with the biomedical system may explain what has been termed “lack of interest” in the specifics of a biomedical diagnosis or interpreted as “denial” ( ; ; ).

Illness and Wellness Behaviors

Implications for Nursing Care

The traditional Appalachian folk health system is in transition. While some traditional practices remain, others are diminishing. The health beliefs and any herbal therapies should be explored in depth in relation to the current clinical situation. Appalachians have a high need for health information and actively seek information resources. Aiding the client to find an appropriate level of health information is a central function of the nursing role. Folk therapies that are neutral or beneficial should be encouraged. In the case where folk therapies or over-the-counter combinations may prove harmful, the nurse should provide health information in a clear, nonjudgmental manner.