Chronic Illness

Patterns of health, sickness, and death differ dramatically among countries based on levels of economic development, health policies, and medical technologies. By the mid-1900s, people living in developed (industrialized) countries experienced a sharp decline in their incidence of acute, infectious illness and an increase in rates of chronic illness. The National Commission on Chronic Illness defines a chronic illness as having one or more of the following characteristics: It is long-term or permanent; it leaves a residual disability; its causes, natural course, and treatment are ambiguous; it is degenerative; it requires special training of the patient for rehabilitation; and it requires a long period of supervision. Examples of chronic illness include asthma, allergies, heart disease, diabetes, hypertension, stroke, cancer, cystic fibrosis, sickle-cell disease, varicose veins, arthritis, cirrhosis of the liver, renal disease, and mental illness. As these examples suggest, chronic illnesses range in severity from those that are relatively mild and can be controlled by medical therapies and changes in health behaviors to those that are severe, degenerative, and terminal, causing disability and creating the need for long-term, extensive medical care. Chronic illnesses, now the leading cause of death in industrialized countries, often develop gradually due to a combination of environmental, genetic, or social factors. In many cases, the specific cause of a chronic illness cannot be determined, and its diagnosis and treatment can be difficult. This shift in the disease burden from acute to chronic illness has several important consequences. First, it accentuates global disparities in health and wellbeing, as most people living in less-developed countries have shorter life spans and high rates of death from acute, parasitic, infectious, and/or poverty-related illnesses. Second, chronic illness challenges the assumptions of modern medicine which, based on the "germ theory" of disease, has focused on finding cures for short-term illnesses with clear causes. Finally, the rise of chronic illness has increased the role of families in providing care for their sick and/or disabled members and caused governments to reassess their health policies.

Sickness in Historical Context

Sickness and death historically were caused mostly by poor nutrition, inadequate housing, unsanitary living conditions, poverty, warfare and—as population density and urbanization grew—exposure to bacteria, parasites, and communicable diseases. These conditions gave rise to acute illnesses such as influenza, scarlet fever, whooping cough, polio, pneumonia, and tuberculosis. In most cases, acute illnesses occur suddenly and are characterized by a sharp increase in discomfort and pain due to an inflammation, and are of short duration. Whether endemic or epidemic, these illnesses contributed heavily to the high mortality rates and short life spans among persons living in pre-industrial societies. Notable among acute, communicable diseases was the bubonic plague, which caused more than 20 million deaths in Europe between 1340 and 1750 (Cockerham 2001). Prior to the 1900s, acute health conditions rarely could be treated successfully by medical therapies, so they were self-limiting, as they led to either spontaneous recovery or to death within a fairly short period of time. Access to doctors was limited, as were effective medical therapies, so families usually took care of their own sick members; however, the duration of that care tended to be relatively short. By the 1700s, however, industrialization, modernization, new medical technologies, and public health measures were transforming the lives of people living in many Western countries. These forces eventually restructured the workplace, produced a system of monopoly capitalism based on class and wealth, and created a global economy dominated by a handful of industrialized nations. One result of this uneven level of economic development has been substantial disparities in wealth and health among populations living in developed countries and those living in less developed, or developing countries.

In its early stages, industrialization resulted in a rapid deterioration in the living standards and working conditions of most people living in Western countries. Traditional families and economic systems were disrupted as populations migrated into urban areas in pursuit of employment. The lack of clean water and sanitation, the spread of environmental toxins, population concentration, malnutrition, and the nature of industrial work increased sickness and death from contagious diseases. Gradually, public health measures and improvements in diet, housing, water supplies, and sanitation reduced the spread of deadly diseases in these countries. However, as their economic and military dominance grew, industrialized countries rapidly gained control over many underdeveloped countries. Through colonialism and the exploitation of material and human resources, these countries lost control of their economies and suffered dramatic increases in infectious diseases and death. Today, level of economic development has become a major predictor of patterns of health, illness, and death: People living in developed countries usually have better health profiles and longer life spans than those living in developing countries. Life expectancy at birth now ranges from a high of more than eighty years of age in developed countries to less than fifty years in some developing countries (Population Reference Bureau 1998). This gap in life expectancy is largely due to the fact that people in developing countries are still disproportionately affected by acute, infectious, and/or parasitic illnesses that lead to early death. Only about 1 percent of people in developed countries die from infectious and parasitic diseases, compared to 43 percent of those in less developed nations (Weitz 2001).

People in developed countries have experienced the "epidemiological transition"—a shift in the disease burden from high rates of death from acute, parasitic, infectious diseases, and short life expectancy to longer life expectancy and high rates of chronic diseases. The first phase of the transition consisted of improvements in hygiene, sanitation, living conditions, and nutrition, which curtailed the spread of contagious disease. Many less developed societies (e.g., Sri Lanka, Cuba, Costa Rica, Kerala, and China) have substantially increased life expectancies through these measures, and by providing greater education, independence, and family planning resources to women (Caldwell 1993; Hertzman and Siddiqi 2000). The second phase in the transition was the rise of scientific medicine. Medical inventions and discoveries during the mid-1800s, especially in Germany and Austria, led scientists and physicians to reformulate the problem of disease and focus on medical intervention to heal diseases. Rudolf Virchow's discovery of cellular pathology was a major breakthrough, as was Robert Koch's and Louis Pasteur's confirmed the link between bacteria and illnesses (Cockerham 2001). At that time tuberculosis, known as the "white plague," was still the leading cause of sickness and death in Europe and the United States. Koch isolated the germ that caused tuberculosis and Pasteur, proving that many diseases were caused by the spread of bacteria, advanced the use of vaccinations to prevent diseases.

Advances in medical science, the development of more accurate diagnostic technologies, and use of antiseptic surgery, gave birth to modern scientific medicine. The germ theory of sickness became the basis of medical practice and the medical approach to dealing with disease. Scientific medicine's success at reducing infectious disease generated great enthusiasm that a cure for virtually all diseases would eventually be found. Pursuit of the "magic bullets" of medicine, or drugs that would "miraculously" heal diseases, became the focus on medical science. Control over contagious diseases and the germ theory of sickness gave rise to a specific conceptualization of health and illness described as the medical model of disease. The medical model of disease assumes there is a sharp and clear distinction between illness and health, based on the belief that sickness can be readily detected by diagnostic tests and confirmed by physicians. Because it is based on acute, infectious diseases, this model also assumes that diseases have specific causes and clearly distinguishing characteristics, and that they can be healed by medical therapies (Mishler 1981).

The development of modern medicine, combined with an expansion of industrialization and specialization, directly affected families in Western nations. Families in agricultural societies were typically large and multi-functional entities that emphasized economic self-sufficiency through the productive labor of all family members. Industrialization, however, moved economic production from homes to factories, excluded women from the workforce, and created the ideology of the breadwinner-homemaker family as best suited to the needs of the industrial economy. One of the most important changes was the loss of family functions. Families were redefined as specialized institutions with two important functions: raising children and meeting the emotional needs of its members. The modern nuclear family was seen as too small and emotionally bonded to effectively care for their sick members, and it was admonished to leave medical care in the hands of professionals. Talcott Parsons, a leading sociologist of the 1950s, argued that the use of physicians and hospital care was functional for families in that it protected them from the disruptive aspects of illness and helped motivate the sick person to get well (Parsons and Fox 1952). Parsons's family theory was consistent with his concept of the sick role, which described the social expectations governing the behavior of sick persons. Essentially, sick people were seen as exempt from their usual social responsibilities but obliged to try to get well, specifically by seeking competent medical advice and complying with medical treatments. The sick-role concept reinforced the medical model by assuming that illness was a temporary departure from health that was best handled by doctors and health care institutions. By the 1960s, however, these theories were being challenged by the growing prevalence of long-term, chronic health conditions.

The Rise of Chronic Illness

Control over acute, infectious illnesses has led to longer life spans for many populations, but also growing rates of chronic illness. Chronic illnesses, however, are not randomly distributed in populations. Although level of economic development is a major predictor of health and life span, patterns of sickness and death also vary within countries based on factors such as social class, age, gender, and race. Wealthy and middle-class people in all countries have better health profiles and longer life spans than those who are less affluent (Fosu and Subedi 1996; Reid 1998) and, in both developed and developing countries, high levels of economic inequality predict higher rates of early death (Lobmayer and Wilkinson 2000). The bulk of the disease burdens falls to the poor and lower classes in all countries, as they are most likely to experience malnutrition, poor living and working conditions, and stressful lives. Acquired immunodeficiency syndrome (AIDS) is a chronic illness that has reached epidemic proportions in parts of Africa, and poverty among some groups in the United States has been associated with a resurgence of acute, infectious illness. Age is also a crucial variable in the distribution of chronic illnesses, as longer life spans help account for the prevalence of chronic conditions. In most developed countries, the number of elderly (over age sixty-five) people has grown tremendously. Among the elderly, a few chronic illnesses, specifically stroke, cancer, and heart disease, are the leading causes of death, whereas arthritis and diabetes cause most sickness (Weitz 2001). This pattern is reversed for children, however, who are affected by more than two hundred different chronic conditions and disabilities (Ireys and Katz 1997). At least partially because they live longer, women in developed countries have higher rates of chronic illness than do men, although they are less likely than men to have life-threatening chronic illnesses. Finally, race-ethnicity affects health and access to health care, with marginalized racial groups experiencing more sickness and early death than dominant racial groups. Much of the racial difference is due to higher levels of stress and poverty, and less access to health care (LaVeist 1993; Williams 1990). As Wagar Ihsan-Ullah Ahmad (2000) notes, when racial minorities seek health care they are more likely to have their citizenship rights questioned, face language barriers, be blamed for their own health problems, and receive inadequate medical care (Ahmad 2000; LaVeist 1993).

The proliferation of chronic illness challenges the medical model of illness and the current organization and focus of medical care. The medical model of illness has traditionally focused on discovering the link between specific illnesses and their biological agents (e.g., "germs"). Chronic illnesses, however, are rarely the result of a specific pathogen. In many instances the symptoms and course of chronic conditions are variable and ambiguous, so getting an accurate diagnosis can be a long and difficult process. Persons with chronic illnesses often ignore the illness, self-medicate, and/or unconsciously adapt to the symptoms of the disease, especially if they are relatively mild (Charmaz 1991). Most symptoms of illness are treated without the assistance of medical experts: It is usually only when symptoms become persistent, disruptive, visible, and difficult to explain that physician care is sought (Mechanic 1995). Even after medical attention is sought, the gradual and sporadic appearance of symptoms or the unusual nature of the disease may make an accurate and early diagnosis difficult (Hill 1994). In the end, the patients may be diagnosed with diseases they have never heard of. As one patient pointed out:

After being sick, or knowing there was something wrong for nearly 17 years, I got a diagnosis of Progressive Systemic Sclerosis, which I had never heard of before. But I was so excited, I was so thrilled for this man to be telling me I had this disease! It was stupid, you know—to have an answer. It didn't matter that it is a potentially fatal disease. None of that stuff mattered! (Thorne 1993, p. 26)

The medical model of illness also has been primarily oriented towards an acute curative model of care that emphasizes emergency treatment and the use of advanced technologies (Thorne 1993). Chronic illnesses, however, are often long-term, incurable, and only rarely can they be prevented by direct medical interventions. The causes of chronic illnesses are often complex and/or ambiguous: Some, such as sickle-cell anemia (found mostly among Africans and African Americans) and Tay-Sachs disease (found among Jews of East European descent) have a genetic component. Others are tied to lifestyle factors or a combination of genetic and environmental factors. Sedentary lifestyles, tobacco and drug use, poverty, and exposure to environmental toxins all affect the likelihood of acquiring a chronic illness. The focus of care for most chronic conditions is managing the illness rather than healing it, yet patients often find no consistent relationship between adhering to medical advice and regimens and the course of the disease. Persons with sickle-cell disease, for example, are often advised to avoid physically rigorous activities, but as one victim pointed out:

I remember getting a [pain] crisis and I weren't doing nothing strenuous, and I weren't in the cold, and I wasn't doing nothing to bring it on. Basically I sat down and done nothing and I was still ill so I just couldn't do nothing to prevent it. That's what was making me so fed up with it. I mean, I don't know, what else are you supposed to do? (Atkin and Ahmad 2000, p. 51)

Because neither patient nor doctor experiences the gratification of a complete recovery, chronic illnesses have been described as medical failures. Patient compliance becomes a major issue because many medical therapies are expensive, inconvenient, and only marginally effective. The most salient feature of chronic illness is its permanency.

Living with Chronic Illness

There is considerable variability among chronic conditions in their severity, symptoms, and the extent to which they impose limitations on their victims. Some are relatively mild "lived-with" conditions that require lifestyle changes and/or compliance with medical regimens, whereas others are severe, life-threatening, and/or degenerative. In either case, the first step in living with chronic illness is emotional acceptance of the diagnosis and its implications. The diagnosis of chronic illness can generate intense emotional distress in patients and their families. Parents of chronically ill and/or disabled children often experience shame and guilt, and these feelings are exacerbated if they feel responsible for the condition. Their emotional distress is often manifested as feelings of extreme vulnerability, helplessness, and uncertainty over the future (Cohen 1993). As the mother of a fifteen-year old diabetic son said: "I was completely devastated, I was—just really couldn't believe it, like the rug had been pulled out from under me" (Williams 2000, p. 262). In most cases, these feelings wane as individuals accept the diagnosis and begin to cope with its implications. Some research, however, challenges the notion that people move through a series of stages that culminate in emotional acceptance of the illness. Parents may experience chronic sorrow, a "continuous sense of sadness that does not exhibit stages such as shock, anger, and guilt" (Shannon 1996, p. 322). Others deny the diagnosis for an indefinite period of time—often years. For example, a study of families with children who have sickle-cell disease found that mothers denied the diagnosis for a number of reasons—fear that it was racially motivated, the belief that their children were not like others who had the disease, and because they did not want to face the reproductive implications of passing the disease on to future children (Hill 1994). Although denial is typically seen as maladaptive, some research has indicated that denial can have beneficial effects, such as reducing psychological distress and allowing people to continue to participate in important roles and activities (Handron 1993).

Depending on the nature and severity of the condition, living with a chronic illness can prove extremely challenging. Psychologically, people with chronic illnesses experience a number of fears, for example, the fear of keeping their body and self-esteem intact, of losing love, relationships, and the approval of others, and of pain and discomfort (Miller 2000). Constant, recurrent, and/or unpredictable episodes of pain often cause feelings of loss of control. This pain can be constant and all-consuming, making symptom management and participation in everyday activities difficult. Peter E. S. Freund and Meredith B. McGuire (1991) have noted that chronic pain can jeopardize social relationships and lead to isolation, as it often invokes invalidating responses from others. The pain experienced by chronically ill persons often has no organic basis and cannot be verified medically, so others may doubt its existence. This can lead to loss of social relationships with others, as the empathy and support of friends and relatives begins to wear thin. Chronically ill people also have to contend with medical treatments and their side-effects, inexplicable remissions and exacerbations of the disease, and changes in lifestyles, activities, roles, and relationships. Some changes are relatively minor; however, others are substantial and are often experienced as a series of losses—of freedom, of hobbies, of employment, of physical appearance and abilities, and even of friendships. Many cause a loss of control over the body, which can lead to stigma and devaluation. In describing living with a chronic respiratory illness, characterized by lack of energy and breathlessness, Clare Williams (1993) sees the illness as causing "dwindling social and recreational lives; social isolation; problems of social interaction, stigma, legitimacy and the tolerance of others towards the condition; the threat or reality of 'dependency' . . . and problems pertaining to family life" (p. 130).

Chronic illness is accompanied by a great deal of uncertainty, since even with the best medical care, its course and severity can vary from patient to patient. Mothers of children with sickle-cell anemia experienced considerable uncertainty over how the disease would affect their children, especially when the diagnosis was made prior to the manifestation of symptoms (Hill 1994). Rose Weitz (1990) interviewed persons who have AIDS and found uncertainty to be a major theme. People living with AIDS experience a number of uncertainties: uncertainty about the meaning of illness symptoms, why they had become ill, their ability to function the next day, whether they would be able to live or die with dignity, and whether their health regimens would prolong their lives or heal the disease. Because self-image is integrally tied to the body and a sense of having control over it, the self-image can be dramatically altered by chronic illness.

Family Caregiving

Although modern family and medical ideologies of the mid-1900s argued the wisdom of greater reliance on physicians and medical institutions, the emergence of chronic illness has led to a reassertion of the importance of families in caring for the sick. Modern medical interventions and technologies that have extended the lives of chronically ill persons without affecting complete recovery have increased the responsibility of families for caring for the sick. Many chronic illnesses that once signaled early death (e.g., kidney failure) or institutionalization (e.g., mental illness) can now be managed by medical therapies administered in the home. Moreover, the escalating costs of health care in most countries has led to restrictions on access to physicians and medical facilities and fosters an interest in self-care and family care. Providing long-term care for chronically ill or disabled family members can disrupt the normal functions of families, and it almost always causes stress. Examining caregiving within the context of stress theory, Carol S. Aneshensel, Leonard Pearlin, and Roberleigh Schuler (1993) make a distinction between primary stressors, caused by performing the work required to care for the sick family members, and secondary stressors, problems that emerge in social roles and relationships as a result of caregiving. This distinction highlights the fact that caregiving work is not only stressful because it requires the performance of difficult physical and emotional tasks—for example, supervising, monitoring, encouraging, medicating, lifting, bathing, and feeding—but also because of secondary stressors: marital discord, social isolation, economic strains, and family dysfunction.

Family caregiving for children can start from birth and last indefinitely, especially if the illness or disability prolongs their dependency. Research indicates that about 20 percent of all U.S. children have a chronic illness or disability, and 10 percent have problems that create caregiving demands, including millions who are disabled (Butler, Rosenbaum, and Palfrey 1987; Sexson and Madan-Swain 1993). The amount of caregiving work performed by family members ranges from fairly minimal to extensive, depending on the nature of the illness. Many children have "lived-with" diseases such as asthma, epilepsy, or diabetes that cause episodic health crises, but can often be managed on a daily basis through special diets, medications, and changes in activities. Asthma, the most common childhood chronic illness in the United States, affects five million children and is a growing cause of sickness and death (Bleil et al. 2000). Asthma is episodic in nature, causing periodic bouts of breathlessness, wheezing, and coughing. A study of teenagers with asthma by Williams (2000) describes the caregiving role of mothers as "alert assistants" who monitor and supervise their children's compliance with medical treatments and manage medical crises. On the other hand, illnesses like kidney disease, cystic fibrosis, and spina bifida can be progressive and cause constant pain and impairment.

A great deal of research has focused on children with cystic fibrosis, the most common lethal genetic disease in the United States with an incidence of 1:200 white births (Solomon and Breton 1999). Cystic fibrosis, a progressive disease that leads to early death, requires extensive caregiving work, including "oral medications and special diets, aerosol therapy and bronchial drainage (prescribed two to four times a day, requiring about an hour each time), exercise, and mist tent therapy at night" (Patterson 1985). Providing such extensive care for their children can place a strain on interactions between parents and their sick children. C. Ruth Solomon and Jean-Jacques Breton (1999) observed parents of young children (ages one to two) with cystic fibrosis over a twelve-month period and found that, compared to parents of healthy children, they were more controlling, more serious, and less encouraging in their interactions with their children. Medical therapies are complex, difficult to learn, and can occupy so much time that they become the center of family life. They may also be risky and interfere with normal parental behavior, which ordinarily centers on being nurturing and supportive. One study of pediatric ambulatory dialysis found that parents have difficulty reconciling parenting with the administration of medical regimens:

Parents are asked to monitor the child's physical state intensely. They are also told not to allow the child's medical problems to become the main family focus. Parents are instructed that an error in the sterile technique could result in their child's serious illness, yet staff is also concerned that parents should not experience excessive anxiety. Parents are asked to function as both medic and parent, and yet it is also expected that the child will be able to progress through the normal stages of separation and individuation (LePontis, Moel, and Cohn 1987, p. 83).

In addition to the work and anxiety entailed in carrying out medical tasks, parents must also address the psychological and emotional needs of the child with chronic illness or disability. Although most children with physical disabilities do not develop mental health problems, they are much more likely to do so than healthy children because of greater social isolation, alienation, and poor school performance (Patterson and Geber 1991; Solomon and Breton 1999). Chronically ill children living in dysfunctional families exhibit much higher rates of psychiatric disorder than those living in well-functioning families (Bleil et al. 2000). Both parents and medical experts endeavor to prevent these problems by encouraging normal life experiences and bolstering coping skills, self-esteem, and confidence of children who are chronically ill. Parents must also try to maintain a sense of balance in meeting the needs of their ill and healthy children.

Longer life spans and an aging population have also made elder care a major responsibility of families. The United Nations (1993) reports that the populations of North America, Europe, Asia, and Latin America are aging at approximately equal rates and that by 2025 those age sixty-five and over will number more than 822 million—or about 10 percent of the global population. The bulk of caregiving work performed today is for the elderly, as chronic conditions, disability, and impaired health increase with age. Heart disease, cancer, stroke, arthritis, and dementia cause most chronic illnesses and disability among the elderly. Eighty percent of the noninstitutionalized elderly have one or more chronic health problems (Freund and McGuire 1991; Wagner 1999). Caregiving for elderly often starts out gradually, with family members assisting elders in paying bills, maintaining their homes, shopping, visiting doctors, or other daily living tasks. In many cases, caregiving work expands and becomes more emotionally and physically exhausting as health declines. When the health status of an elderly person dramatically declines, family members usually rally in support by providing care for their loved one. However, there is a tendency for that support to wane over time and for one primary caregiver to be selected by default: usually based on being female, living nearby, and being unemployed (Aneshensel, Pearlin, and Schuler 1993). As few elderly people have young children, most caregiving work falls to those who are middle-aged or elderly. The quality of the relationship between caregiver and care receiver is an important factor in caregiver burden. Caregiving can solidify emotional bonds in close relationships; on the other hand, it may cause longstanding family disagreements to reemerge.

Much research has focused on caregiving for elderly people with dementia, a long-term, degenerative disease that can require extensive and exhaustive care work. Dementia is defined as "disorders involving impairments of memory, intelligence, judgment, and neuropsychology, which are sufficient to inhibit carrying out social activities or work" (Aneshensel et al. 1995, p. 7). Mild levels of dementia affect more than 60 percent of the elderly and, according to Aneshensel and her associates, 4 to 7 percent of the elderly in North America and Europe have moderate to severe levels of dementia. Alzheimer's disease is the most common type of dementia, and caring for its victims can be highly stressful and lead to family dysfunction. In the early stages, family caregivers may recognize that there is a health problem and respond by providing minimal types of assistance. Aneshensel, Pearlin, and Schuler (1993) found that the average caregiver for patients with Alzheimer's disease had been providing care for more than three years before a doctor was consulted. The tendency of individuals with Alzheimer's disease to deteriorate cognitively and physically causes unique caregiving problems. Studies have suggested that cognitive impairment increases strain because it creates an ambiguity in the family boundary: The patient's failure to recognize or emotionally respond to the caregiver creates confusion over whether the patient is in or out of the family system (Boss, Caron, and Horbal 1988). Whatever the strains, caregiving for elderly people is often time-bounded, as serious, degenerative disease among elderly people often leads to death or institutional care.

The notion of "family" caregiving obscures the fact that women do most of the caregiving work. Gender norms that prescribe nurturing and domestic roles for women naturally assign women the responsibility for caring for sick family members at home (Gerstel and Gallagher 1993). In some cultures male caregivers are denigrated: For example, a study of caregiving in South Asian communities found that men who took on the role of caregiver—especially those who quit their jobs to do so—were stigmatized and seen as unworthy of respect (Katbamna, Baker, Ahmad, Bhakta, and Parker 2001). There is also a gender division in the type of work that men and women perform and in their styles of caregiving. Men perform more instrumental tasks for relatives with disability or illness, such as lawn maintenance, lifting, and assisting with financial matters. They also have a more activity-oriented, managerial, and emotionally detached style of caregiving and, when they are the primary caregiver, they receive more help from others in carrying out their tasks (Boss, Caron, and Horbal 1988; Ungerson 1987). Women view caregiving as a duty and obligation and have styles that are more expressive and supportive. They provide more personal service than do men, receive less assistance from others in performing their work, but do have more sources of emotional support. The gendered nature of caregiving work means that the lives of women are more affected than those of men. Caregiving substantially increases the amount of work they perform in the family and may undermine opportunities for employment and other activities.

More recent studies have begun to examine an additional impact of gender on chronic illness: How the sex of the chronically ill or disabled person affects caregiving. For example, in countries where female modesty and chastity are strongly emphasized, caring for sexually mature women can be more difficult than caring for their male counterparts (Katbamna, Baker, Ahmad, Bhakta, and Parker 2001). Parents' caregiving for chronically ill children may also be shaped by gender norms and expectations. Being sick, dependent, or frail is seen as more of a violation of traditional gender norms for men than for women; as Kathy Charmaz (1995, p. 268) has noted, "illness can reduce a man's status in masculine hierarchies, shift his power relations with women, and raise his self-doubts about masculinity." Some research finds that parents see sick sons as more impaired by the illness and less capable of self-care, and that they devote more time and energy to providing care for them (Hill and Zimmerman 1995). Williams (2000) found that boys are more likely than girls to hide their chronic illness, which makes compliance with medical regimens difficult. One mother described her diabetic 15-year old son refusing to do insulin injections at school:

He won't do them [blood sugars] at school now, he absolutely refuses, he won't even do an injection at school. He's on three injections a day and the hospital would like him to go on to four but he won't do it in front of his friends, and he doesn't like the fact that he is diabetic in that respect, he wants to be normal. (Williams 2000, p. 261)

Studies of family caregiving have often focused on caring as burdensome and disruptive to families, especially women, and as a threat to family stability. However, researchers have begun to emphasize the subjective and experiential aspects of caregiving that arise from the meanings assigned to the work (Fisher and Tronto 1990; Traustadottir 1991). Although caregiver work needs to be recognized, it need not be seen as inherently burdensome or unworthy: Rather, caring can be empowering as it enhances the quality of life for chronically ill and/or disabled persons. This may be especially true when there is a close and reciprocal relationship between caregivers and those they care for. Kathleen Theide Call and her colleagues (1999) use a social exchange perspective to point out that dependent and chronically ill people who receive care often reciprocate in a number of ways, and feel uncomfortable when they cannot do so. They found that caregiving is less burdensome when the care receiver is deemed as worthy and the caregiver is a part of the immediate family. The majority of care receivers have not relinquished all their family roles, relationships, and life activities, but rather they continue to participate in and make vital contributions to their families and communities (Parker 1993). As one researcher points out, "People do not become less human, less interesting, or less deserving just because they have unresolvable or disabling conditions. Rather, they continue to learn, to adapt, and to live their lives as well as they can manage. In other words, they seek a state of health that represents their best effort within the specific challenges of the disease" (Thorne 1993, p. 2).

Stress, Social Support, and Coping

Although providing care for chronically ill and/or disabled family members is inherently stressful, several factors mediate the impact of that stress. Family structure, economic resources, social support, and coping resources and strategies all have an impact on the caregiving experience. Family structure may mediate the impact of caregiving for African Americans, who reportedly experience less stress and burden than other racial groups. One study explains this by noting that African Americans rely on a more diverse group of caregivers, including extended family members and close friends (Tripp-Reimer 1997). Economic resources can also influence caregiving work. Patricia G. Archbold (1983) found that affluent caregivers were care managers who used a variety of institutional resources to coordinate their parents' care, whereas low-income women were direct care providers who performed the heavy physical work of nursing care and personal service. Stress is also reduced by the availability of social support; in fact, social support may also ameliorate the physical symptoms of illness and enhance survival. Many types of social support have been examined, but the three most basic types are emotional support, which fosters feelings of comfort; cognitive support, which entails providing information, knowledge, and advice; and material support, the offer of goods and materials ( Jacobsen 1986). Most people expect informal support from their friends and family members, and find such support available and adequate. However, there is a tendency for informal sources of support to be available during acute stages of the illness, such as the diagnosis or terminal stage, but to wane when the illness continues over an extended period of time.

Formal sources of social support are available on a more consistent basis and provide the advantage of talking with experts or people experiencing similar problems. Hospitals, schools, and state and private institutions offer support groups for people with various chronic conditions. These groups provide education about the illness or disability and information about resources available in meeting the daily needs of families. A central theme in support groups is empowerment, which refers to providing chronically ill people and their caregivers with the maximum amount of control over their own lives. Sarah Rosenfield (1992) reported that community resources can enhance the subjective quality of life for persons with chronic illnesses. Evaluating services available for the chronically mentally ill, she found that programs that increase economic resources through vocational training and financial support also increase the status, sense of mastery, and life satisfaction of clients. Findings such as these have led to a growth in the organization of support groups which focus on building family strengths and providing counseling and referral services.

In addition to using social and community resources that enhance coping, chronically ill persons and their families engage in a number of coping activities that mitigate the impact of the illness. Coping has been defined as the things people do to avoid or minimize the stress that would otherwise result from problematic conditions of life (Pearlin and Aneshensel 1986), and coping involves both having resources and using various coping strategies. Coping resources are the psychological and material assets available to individuals and their families in responding to stressful situations. Coping strategies, on the other hand, are the actual behaviors or responses people use in dealing with stressful events. At the individual level, coping resources include one's education, income, self-esteem, sense of mastery, and psychological hardiness, all of which affect one's ability to deal effectively with life strains. Early studies identified integration and adaptability as key family resources (Hill 1954), and other studies have built on this theme. Integration refers to having strong ties of affection, pride in family tradition, and a history of sharing in activities. Adaptability means having flexible social roles, sharing responsibility for performing tasks, and communicating openly. Coping is enhanced when the family does not blame itself for the illness, feels confident in its ability to manage the situation, and continues to be sensitive and responsive to the needs of all family members. Communication and emotional expressiveness, role relationships, available caregivers, and financial resources are all important resources in managing illnesses.

A variety of coping strategies have been identified among persons who experience life strains, including prayer, stoicism, physical activity, denial, withdrawal, and ignoring the problem. The two most common strategies for coping with long-term chronic illness and its debilitating effects, however, are normalization and the attribution of meaning. After the initial impact of the diagnosis of chronic illness wanes, family members are eager to resume their normal lives. Whatever the level of physical or mental impairment caused by the illness, most people do not want the illness to threaten the self-identities, social roles, or activities that they value, or to become the dominant factor in their interactions with others. To avoid this, they attempt to normalize the situation by minimizing the illness and conveying the impression of normalcy to others. One normalizing strategy is to describe behaviors associated with the illness, such as pain, crying, fatigue, forgetfulness, diet changes, and drug therapies, as things that all people experience or engage in from time to time. Parents often make sure that their ill or disabled children participate in as many normal school and household activities as necessary. In some cases chronically ill people invest a great deal of energy in their efforts to manage the impressions and responses of others; they may disguise symptoms, avoid embarrassing situations, or control the information available to others.

The attribution of meaning, a coping strategy that refers to defining the illness in a positive manner, is also an effort to maintain a certain balance in family life. Parents and other family members often view the illness as increasing family cohesion, their patience, and their faith in God or as leading them to develop more meaningful goals and values. Parents may also redefine the expectations they have for their child with chronic illness or disability in a way conducive to maintaining a positive self-image. In a study focusing on preventing mental health problems among children with chronic illness, Joan M. Patterson and Gayle Geber (1991) point out that meanings are at the core of determining whether a disability leads to a handicap, which is a discrepancy between role expectations and actual role performance. The process of definition allows people with chronic illness and their families to endow the illness with meaning.

Although scientific medicine has made progress in treating and managing chronic illnesses, there is little hope that medical interventions will completely eradicate these illnesses. Moreover, the growing elderly population, the prevalence of chronic conditions, the proliferation of medical technologies, and the expectation of virtually unlimited access to medical care has placed severe strains on the health care systems of developed countries. As a result, health authorities are now emphasizing preventive care, healthy lifestyles (e.g., dietary changes, stress reduction, and exercise) as the key to preventing chronic illness, and patients are relying on a broader range healing options such as herbal therapies, acupuncture, and massages. Rather than continuing to focus on finding biophysical/technological cures for every disease, some argue that our attention should be directed toward improvements in primary care and a focus on caring rather than curing. Caring has been defined as "a positive emotional and supportive response . . . to affirm our commitment to their well-being, our willingness to identify with them in their pain and suffering, and our desire to do what we can to relieve their situation" (Callahan 1990, p. 111).

See also:Acquired Immunodeficiency Syndrome (AIDS); Alzheimer's Disease; Anxiety Disorders; Attention Deficit/Hyperactivity Disorder (ADHD);Caregiving; Death and Dying; Depression: Adults; Depression: Children and Adolescents; Dementia; Disabilities; Grief, Loss, and Bereavement; Health and Families; Homeless Families; Hospice; Industrialization; Learning Disorders; Poverty; Respite Care: Adult; Respite Care: Child; Schizophrenia; Stress; Substance Abuse; Substitute Caregivers

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