Chronic Illness - Stress, Social Support, And Coping

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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 (TrippReimer 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" (

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