Resource Logo

The labor of caregiving: a theoretical model of caregiving during potentially fatal illness.


Qual Health Res. 1999 Mar;9(2):182-97. Unique Identifier : AIDSLINE

The purpose of this study was to explore the influence that chronic and potentially fatal illness has on the caregiving process over time. Data were collected through in-depth interviews with 26 family caregivers of people experiencing AIDS or advanced cancer over a 4-month period. Constant comparative analysis was used to analyze the data. A substantive theory of family caregiving for people with life-threatening illnesses was developed around a core organizing theme: the labor of caregiving. Four phases emerged: becoming a caregiver, taking care, midwifing the death, and taking the next step. This study validates the taking-care or "tasks" aspect of caregiving, revealing that issues and tasks vary in each phase of caregiving. The key role of the caregiver in contributing to the quality of life of the ill person was apparent in the initial phase of an illness as well as at the time of death.

JOURNAL ARTICLE Acquired Immunodeficiency Syndrome/*NURSING Adaptation, Psychological Adult Aged Aged, 80 and over Attitude to Death Caregivers/*PSYCHOLOGY Chronic Disease/*NURSING *Cost of Illness Data Collection/METHODS Female Home Nursing/*PSYCHOLOGY Human Male Middle Age Models, Theoretical Neoplasms/*NURSING Stress, Psychological Support, Non-U.S. Gov't


Information in this article was accurate in December 30, 1999. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.