Chronic Illness

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 A young girl helps her friend with a blood sugar test. Both children have diabetes. Informal support from friends and family reduces stress and may ameliorate the physical symptoms of chronic illness. A/P WIDE WORLD PHOTOS 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).