The prevalence of informal caregiving to persons with aids in the United States: Caregiver characteristics and their implications

Based on U.S. national ( N = 2673) and central cities ( N = 8263) probability samples, this paper: (1) presents estimates of the proportion of the United States population that has provided informal care to persons with AIDS; (2) identifies socio-demographic characteristics of ‘typical’ AIDS caregiv...

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Bibliographic Details
Published in:Social science & medicine (1982) 1994-06, Vol.38 (11), p.1543-1552
Main Authors: Turner, Heather A., Catania, Joseph A., Gagnon, John
Format: Article
Language:English
Subjects:
Acquired immune deficiency syndrome
Acquired immunodeficiency syndrome
Acquired Immunodeficiency Syndrome - epidemiology
Acquired Immunodeficiency Syndrome - nursing
Activities of Daily Living
Adolescent
Adult
Aged
AIDS
AIDS caregiving prevalence socio-demographics
AIDS Serodiagnosis
AIDS/HIV
Biological and medical sciences
Bisexuality
Caregivers - psychology
Caregivers - statistics & numerical data
caregiving
Cost of Illness
Data Collection
Female
Health care
Health Care Costs
Health Status
Home Nursing - statistics & numerical data
Homosexuality
Humans
Immunodeficiencies
Immunodeficiencies. Immunoglobulinopathies
Immunopathology
Informal care
Male
Medical sciences
Middle Aged
Patients
Prevalence
Sampling Studies
Social research
socio-demographics
Sociodemographic aspects
Socioeconomic Factors
Stress, Psychological - epidemiology
Stress, Psychological - etiology
United States - epidemiology
Urban Health
USA
Workload
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Summary:Based on U.S. national ( N = 2673) and central cities ( N = 8263) probability samples, this paper: (1) presents estimates of the proportion of the United States population that has provided informal care to persons with AIDS; (2) identifies socio-demographic characteristics of ‘typical’ AIDS caregivers in the U.S.; and (3) discusses social, economic and health-related implications of informal caregiving to persons with AIDS. Results indicate that 5.0% of all adults age 18–75 living within central cities and 3.2% of the entire adult U.S. population have provided care to a friend, relative or lover with AIDS. Although caregivers are distributed throughout different age and ethnic groups, the majority of caregivers are younger (< 40 years) and white. Males, gay and bisexual men in particular are over-represented among central cities caregivers. Data on the types of caregiving tasks performed show that 64.4% of all caregivers within central cities perform domestic types of caregiving tasks, while 27.7% are involved in personal care of AIDS patients. Caregivers are more likely than non-caregivers to have been tested for HIV, and among the tested, caregivers are more likely to have tested positive. While informal caregiving reduces costs to the formal medical sector, costs to the caregivers themselves should be considered. Physical and emotional stress, as well as reduced opportunity for social and economic development, represent potential outcomes of caregiving. Socio-demographic characteristics of AIDS cargivers, such as their typically young age, suggest that these caregivers may be at particular risk for detrimental consequences.
ISSN:0277-9536
1873-5347
DOI:10.1016/0277-9536(94)90116-3