Caregiving

Informal caregivers play a central role in assisting the elderly and disabled. Since the 1980s, the media, researchers and public policy-makers have focused on caregiving as a consequential issue. As a large segment of the population ages, family caregivers become increasingly vital. They are the first and most reliable form of assistance. They provide direct care and act as links to hospitals, medical professionals, nursing homes and professional caregiving services.

The context of caregiving varies from family to family. While popular notions of caregiving stress the burdensome aspect, not all families find caregiving difficult. Care arrangements differ within each circumstance. The degree to which families consider similar problems as taxing differs widely.

Three main factors seem to influence variability in informal caregiving: culture and its impact on intergenerational relationships, comparison of caregiving to those with differing disabilities and changes through time in caregivers' experiences.

Researchers have studied cultural differences in caregiving attitudes. Lucy Yu, in her study of Chinese families, found that Chinese people usually follow the Confucian belief that children should care for their parents in old age. Even those who have emigrated from China follow that belief to some degree.

Morycz provided an insight into the chief role played by culture in informal caregiving. She found an absence of difference, based on race, in experiencing a family burden as a social problem. Human response to the stress of caring for an older relative was not affected by race, education and income. The only significant difference was seen in the perceived strain on white caregivers for Alzheimer's patients more than on blacks.

Along the same lines, Burton and Sorensen researched African American s in inner cities, finding that black caregivers were not as burdened as whites in regard to supervising and performing activities of daily living for Alzheimer's patients. That might be due to their comfort in handling multiple roles and their social construct of kinship.

Caregiving, both expected and non-normative, occurs at many times during a lifetime. Examples are tending to a developmentally disabled child, caring for a child with cancer and helping a mentally ill adult. These cases differ from elder care. Avison found that chronic strains, such as those related to behavioral problems in mentally ill adults and retarded children, exponentially increase the level of a caregiver's stress. Accessing psychosocial resources can be powerfully beneficial to these caregivers.

Caregiving is typically an ongoing process. Stressors, responsibilities and relationships are likely to change in time. Longitudinal studies show how caregiving can affect a provider differently at various points in time. For example, Schulz and his colleagues researched patterns of change in depression of caregivers for Alzheimer's patients. They found that caregiving females were much more prone than noncaregiving women to develop depressive symptoms. The stress of caregiving seemed to compound their depressive tendencies.

Initiating and sustaining the link between informal and formal care typically falls on the shoulders of family members. From both a psychosocial and an organizational perspective, policies and services should consider how these systems are linked. The creation of efficient and cost-effective programs depends on keeping families' needs in mind.

Caregiving organizations are institutions that provide support, healing and growth. The work itself tends to stress its workers. The stress of caregiving can cause organizational problems such as burnout, lack of teamwork and quick turnover of employees.

These organizations include hospitals, schools, counseling centers, social service agencies and treatment centers. All of them involve people's emotions or anxieties. Workers are regularly confronted with clients' full range of emotions, increasing the likelihood of stress.

All caregiving organizations are subject to the emotional nature of their work. They are shaken and bent by the difficulty of helping those in need. Resilient organizations experience periods of disturbance but return to a steady state. Others become permanently disturbed, remaining an irrational system. The key to resilience seems to lie in the ability of leaders and members to retain some reflective capacity and to develop insights about their experiences. Regular reflection allows workers to review their experiences with clients and glean new treatment ideas from their past experiences. Without reflection, they are doomed to repeat their negative experiences.

Support is vital to all caregivers, both institutional and private. People must hear one another out, validate one another's experiences and help each other to develop insights. Without supportive relationships, caregivers can turn to negative coping mechanisms. A caregiver's poor coping can ultimately harm the recipient of care.

Informal caregivers function best when they are given both emotional and physical support. Sharing the caregiving tasks among family members promotes the mental health of all those involved.

Selected full-text books and articles on this topic

Caregiving Systems: Informal and Formal Helpers
Steven H. Zarit; Leonard I. Pearlin; K. Warner Schaie.
Lawrence Erlbaum Associates, 1993
Family Caregivers: Disability, Illness, and Ageing
Hilary Schofield; Sidney Bloch; Helen Herrman; Barbara Murphy; Julie Nankervis; Singh.
Allen & Unwin, 1998
Holding Fast: The Struggle to Create Resilient Caregiving Organizations
William A. Kahn.
Brunner-Routledge, 2004
The Reluctant Caregivers: Learning to Care for a Loved One with Alzheimer's
Anne Hendershott.
Bergin and Garvey, 2000
When Memory Fails: Helping the Alzheimer's and Dementia Patient
Allen Jack Edwards.
Plenum Press, 1994
Librarian’s tip: Chap. 7 "Dementia and the Caregiver," Chap. 9 "Helping the Caregivers"
Appraisal and Coping: Moderators Mediators of Stress in Alzheimer's Disease Caregivers?
Morano, Carmen Louis.
Social Work Research, Vol. 27, No. 2, June 2003
PEER-REVIEWED PERIODICAL
Peer-reviewed publications on Questia are publications containing articles which were subject to evaluation for accuracy and substance by professional peers of the article's author(s).
Distressing Emotions in Female Caregivers of People with AIDS, Age-Related Dementias, and Advanced-Stage Cancers
Flaskerud, Jacquelyn H.; Carter, Patricia A.; Lee, Patricia.
Perspectives in Psychiatric Care, Vol. 36, No. 4, October-December 2000
PEER-REVIEWED PERIODICAL
Peer-reviewed publications on Questia are publications containing articles which were subject to evaluation for accuracy and substance by professional peers of the article's author(s).
Family Experiences with Mental Illness
Richard Tessler; Gail Gamache.
Auburn House, 2000
CAREGIVER MEANING: A Study of Caregivers of Individuals with Mental Illness
Rhoades, Donna R.; McFarland, Kay F.
Health and Social Work, Vol. 24, No. 4, November 1999
PEER-REVIEWED PERIODICAL
Peer-reviewed publications on Questia are publications containing articles which were subject to evaluation for accuracy and substance by professional peers of the article's author(s).
The Nature and Sources of Hope: Perspectives of Family Caregivers of People with Serious Mental Illness
Bland, Robert; Darlington, Yvonne.
Perspectives in Psychiatric Care, Vol. 38, No. 2, April-June 2002
PEER-REVIEWED PERIODICAL
Peer-reviewed publications on Questia are publications containing articles which were subject to evaluation for accuracy and substance by professional peers of the article's author(s).
Wages for Caring: Compensating Family Care of the Elderly
Nathan L. Linsk; Sharon A. Keigher; Lori Simon-Rusinowitz; Suzanne E. England.
Praeger Publishers, 1992
Employment and Caregiving: Exploration of African American Caregivers
Bullock, Karen; Crawford, Sybil L.; Tennstedt, Sharon L.
Social Work, Vol. 48, No. 2, April 2003
PEER-REVIEWED PERIODICAL
Peer-reviewed publications on Questia are publications containing articles which were subject to evaluation for accuracy and substance by professional peers of the article's author(s).
Caring for the Caregivers: Patterns of Organizational Caregiving
Kahn, William A.
Administrative Science Quarterly, Vol. 38, No. 4, December 1993
PEER-REVIEWED PERIODICAL
Peer-reviewed publications on Questia are publications containing articles which were subject to evaluation for accuracy and substance by professional peers of the article's author(s).
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