Chronic Illness
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
Bibliography
Ahmad, W. I. U. (2000). Ethnicity, Disability and Chronic Illness. Buckingham, UK: Open University Press.
Aneshensel, C. A.; Pearlin, L. I.; Mullan, J. T.; Zarit, S. H.; and Whitlatch, C. J. (1995). Profiles in Caregiving: The Unexpected Career. San Diego, CA: Academic Press.
Aneshensel, C. S.; Pearlin, L. I.; and Schuler, R. H. (1993). "Stress, Role Captivity, and the Cessation of Caregiving." Journal of Health and Social Behavior 34:54–70.
Archbold, P. G. (1983). "Impact of Parent-Caring on Women." Family Relations 32:39–45.
Atkin, K., and Ahmad, W. I. U. (2000). "Living With Sickle Cell Disorder: How Young People Negotiate Their Care and Treatment." In Ethnicity, Disability and Chronic Illness, ed. W. I. U. Ahmad. Buckingham, UK: Open University Press.
Bleil, M. A.; Ramesh, S.; Miller, B. D.; and Wood, B. L. (2000). "The Influence of Parent-Child Relatedness on Depressive Symptoms in Children with Asthma: Tests of Moderator and Mediator Models." Journal of Pediatric Psychology 25:481–491.
Boss, P.; Caron, W.; and Horbal, J. (1988). "Alzheimer's Disease and Ambiguous Loss." In Chronic Illness and Disability, ed. C. S. Chilman, E. W. Nunnally, and F. M. Cox. Newbury Park, CA: Sage Publications.
Caldwell, J. C. (1993). "Health Transition: The Cultural, Social and Behavioral Determinants of Health in the Third World." Social Science and Medicine 36:125–135.
Call, K. T.; Finch, M. A.; Huck, S. M.; and Kane, R. A. (1999). "Caregiver Burden from a Social Exchange Perspective: Caring for Older People after Hospital Discharge." Journal of Marriage and the Family 61:688–699.
Callahan, D. (1990). "The Primacy of Caring: Choosing Health-Care Priorities." Commonweal, February 23, 107–112.
Carter, B. D.; Urey, J. R.; and Eid, N. S. (1992). "The Chronically Ill Child and Family Stress: Family Developmental Perspectives on Cystic Fibrosis." Psychosomatics 33:397–403.
Charmaz, K. (1991). Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press.
Charmaz, K. (1995). "Identity Dilemmas of Chronically Ill Men." In Men's Health and Illness–Gender, Power and the Body, ed. D. Sabo and D. Gordon. London: Sage Publications.
Cockerham, W. C. (2001). Medical Sociology, 8th edition. Upper Saddle River, NJ: Prentice Hall.
Cohen, M. H. (1993). "The Unknown and the Unknowable: Managing Sustained Uncertainty." Western Journal of Nursing Research 15:77–96.
Corbin, J. M., and Strauss, A. (1988). Unending Work and Care: Managing Chronic Illness in the Home. San Francisco: Jossey-Bass.
Fisher, B., and Tronto, J. (1990). "Toward a Feminist Theory of Caring." In Circles of Care: Work and Identity in Women's Lives, ed. E. K. Abel and M. K. Nelson. Albany: State University of New York Press.
Fosu, G. B., and Subedi, J. (1996). "The Demographic, Cultural, and Behavioral Contexts of Maternal and Child Health in Developing Countries." In Society, Health, and Disease: Transcultural Perspectives, ed. J. Subedi and E. B. Gallagher. Upper Saddle River, NJ: Prentice Hall.
Freund, P. E. S., and McGuire, M. D. (1991). Health, Illness, and the Social Body: A Critical Sociology. Englewood Cliffs, NJ: Prentice Hall.
Gerstel, N., and Gallagher, S. K. (1993). "Kinkeeping and Distress: Gender, Recipients of Care, and Work-Family Conflict." Journal of Marriage and the Family 55:598–607.
Hamlett, K. W.; Pelligrini, D. S.; and Karz, K. S. (1992). "Childhood Chronic Illness as a Family Stressor." Journal of Pediatric Psychology 17:33–47.
Handron, D. S. (1993). "Denial and Serious Chronic Illness: A Personal Perspective." Perspectives in Psychiatric Care 29:29–33.
Hertzman, C., and Siddiqi, A. (2000). "Health and Rapid Economic Change in the Twentieth Century." Social Science and Medicine 51:809–819.
Hill, R. (1954). "Social Stresses on the Family." Social Casework 39:139–156.
Hill, S. (1994). Managing Sickle-Cell Disease in Low-Income Families. Philadelphia: Temple University Press.
Hill, S., and Zimmerman, M. (1995). "Valiant Girls and Vulnerable Boys: The Impact of Gender and Race on Mothers' Caregiving for Chronically-Ill Children." Journal of Marriage and the Family 57:43–53.
Hymovich, D. P., and Hagopian, G. A. (1992). Chronic Illness in Children and Adults: A Psychosocial Approach. Philadelphia: Saunders.
Ireys, H. T., and Katz, S. (1997). "The Demography of Disability and Chronic Illness Among Children." In Mosby's Resource Guide to Children with Disabilities and Chronic Illness, ed. H. M. Wallace, R. F. Biehl, J. C. MacQueen, and J. A. Blackman. St. Louis, MO: Mosby.
Jacobsen, D. E. (1986). "Types and Timing of Social Support." Journal of Health and Social Behavior 27:250–264.
Katbamna, S.; Baker, R.; Ahmad, W.; Bhakta, P.; and Parker, G. (2001). "Development of Guidelines to Improved Support of South Asian Carers by Primary Health Care Teams." Quality Health Care 10(3):166–172.
Kromer, M. E.; Prihoda, T. J.; Hidalgo, H. A.; and Wood, P. R. (2000). "Assessing Quality of Life in Mexican-American Children with Asthma: Impact on Family and Functional Status." Journal of Pediatric Psychology 25:415–426.
LaVeist, T. A. (1993). "Segregation, Poverty, and Empowerment: Health Consequences for African Americans." Milbank Quarterly 71:41–64.
LePontis, J.; Moel, D. I.; and Cohn, R. A. (1987). "Family Adjustment to Pediatric Ambulatory Dialysis." American Journal of Orthopsychiatry 51:78–83.
Lobmayer, P., and Wilkinson, R. (2000). "Income, Inequality and Mortality in 14 Developed Countries." Sociology of Health and Illness 22:401–414.
Mechanic, D. (1995). "Sociological Dimensions of Illness Behavior." Social Problems 41:1207–1216.
Miller, J. F. (2000). Coping with Chronic Illness: Overcoming Powerlessness, 3rd edition. Philadelphia: F. A. Davis Company.
Mishler, E. G. (1981). "Critical Perspectives on the Biomedical Model." In Social Contexts of Health, Illness, and Patient Care, ed. E. G. Mishler, L. A. Singham, S. T. Hauser, R. Liem, S. D. Osherson, and N. E. Waxler. Cambridge, UK: Cambridge University Press.
Moen, P.; Robison, J.; and Dempster-McClain, D. (1995). "Caregiving and Women's Well-Being: A Life Course Approach." Journal of Health and Social Behavior 36:259–273.
National Commission on Chronic Illness. (1956). Chronic Illness in the United States: Care of the Long-Term Patient, Vol. II. Cambridge, MA: Harvard University Press.
Parker, G. (1993). With This Body: Caring and Disability in Marriage. Buckingham, UK: Open University Press.
Parsons, T., and Fox, R. (1952). "Illness, Therapy, and the Modern Urban American Family." Journal of Social Issues 13:31–44.
Patterson, J. M. (1985). "Critical Factors Affecting Family Compliance with Home Treatment for Children with Cystic Fibrosis." Family Relations 34:79–88.
Patterson, J. M. (1988). "Chronic Illness in Children and the Impact on Families." In Chronic Illness and Disability, ed. C. S. Chilman, E. W. Nunnally, and F. M. Cox. Newbury Park, CA: Sage Publications.
Patterson, J. M., and Geber, G. (1991). "Preventing Mental Health Problems in Children with Chronic Illness or Disability: Parent to Parent Conference." Children's Health Care 20:150–161.
Pearlin, L. I., and Aneshensel, C. S. (1986). "Coping and Social Supports: Their Functions and Applications." In Applications of Social Science to Clinical Medicine and Health Policy, ed. L. Aiken and D. Mechanic. New Brunswick, NJ: Rutgers University Press.
Population Reference Bureau. (1998). World Population Data Sheet. Washington, DC: Author.
Reid, I. (1998). Social Class Differences in Britain. Cambridge, UK: Polity Press
Rosenfield, S. (1992). "Factors Contributing to the Subjective Quality of Life of the Chronic Mentally Ill." Journal of Health and Social Behavior 33:299–315.
Seaburn, D. B.; Lorenz, A.; and Kaplan, D. (1992). "The Transgenerational Development of Chronic Illness Meanings." Family Systems Medicine 10:385–394.
Sexson, S. B., and Madan-Swain, A. (1993). "School Reentry for the Child with Chronic Illness." Journal of Learning Disabilities 26:115–125.
Shannon, C. (1996). "Dealing With Stress: Families and Chronic Illness." In Handbook of Stress, Medicine, and Health, ed. C. L. Cooper. New York: CRC Press.
Sloper, P. (2000). "Predictors of Distress in Parents of Children with Cancer: A Prospective Study." Journal of Pediatric Psychology 25:79–91
Solomon, C. R., and Breton, J. J. (1999). "Early Warning Signals in Relationships Between Parents and Young Children with Cystic Fibrosis." Children's Health Care 28:221–240.
Traustadottir, R. (1991). "Mothers Who Care: Gender, Disability, and Family Life." Journal of Family Issues 12:211–228.
Tripp-Reimer, T. (1997). "Ethnicity, Aging, and Chronic Illness." In Chronic Illness and the Older Adult, ed. E. A. Swanson and T. Tripp-Reimer. New York: Springer.
Turner-Henson, A.; Holaday, B.; and Swan, J. H. (1992). "When Parenting Becomes Caregiving: Caring for the Chronically Ill Child." Family and Community Health 15:19–30.
Ungerson, C. (1987). Policy is Personal: Sex, Gender, and Informal Care. New York: Tavistock.
United Nations (1993). World Population Trends and Prospects: The 1992 Revision. New York: Author.
Voydanoff, P., and Donnelly, B. W. (1999). "Multiple Roles and Psychological Distress: The Intersection of the Paid Worker, Spouse, and Parent Roles with the Role of Adult Child." Journal of Marriage and the Family 61:725–738.
Wagner, E. H. (1999). "Care of Older People With Chronic Illness." In New Ways to Care For Older People, ed. E. Calkins, C. Boult, E. H. Wagner, and J. T. Pacala. New York: Springer.
Weitz, R. (1990). "Uncertainty and the Lives of Persons with AIDS." In The Sociology of Health and Sickness, 3rd edition, ed. P. Conrad and R. Kern. New York: St. Martin's.
Weitz, R. (2001). The Sociology of Health, Illness, and Health Care: A Critical Approach. Belmont, CA: Wadsworth.
Williams, C. (2000). "Alert Assistants in Managing Chronic Illness: The Case of Mothers and Teenage Sons." Sociology of Health and Illness 22:254–272.
Williams, D. (1990). "Socioeconomic Differentials in Health: A Review and Redirection." Social Psychology Quarterly 53:81–99.
Williams, S. J. (1993). Chronic Respiratory Illness. London: Routledge.
SHIRLEY A. HILL
Additional topics
Marriage and Family EncyclopediaFamily Health IssuesChronic Illness - Sickness In Historical Context, The Rise Of Chronic Illness, Living With Chronic Illness, Family Caregiving