FAMILY CAREGIVERS OF THE TERMINALLY ILL ELDERLY AND THE TERMINAL ILLNESS HOME CARE EXPERIENCE
Abstract
While participation of informal family caregivers is recognized as an essential component for effective service delivery in hospice and home care programs for terminally ill elderly patients, the nature and needs of the caregiver group have not been documented. This exploratory study involved personal interviews with 21 primary family caregivers referred by 4 hospice and 3 home care programs in the greater New York area from January 1 to August 31, 1985. Interviews were arranged to accommodate caregivers' convenience and were conducted while caregiving was actually in process. Data sources included records of referring health service providers, interviews guided by an originally designed questionnaire, and systematically recorded researcher observations. Combined quantitative and qualitative analyses revealed varying levels of caregiver commitment, capacity and perceived strain based on interacting personal, pathological and situational factors from the time of the caregivers' initial role involvement, and throughout the caregiving role duration. Illness factors dominated the total caregiving experience. Caregivers perceived help for themselves as well as patients as a vital factor in enhancing commitment, sustaining capacity and lessening strain as the caregiving experience progressed and illness severity increased. Findings suggest increased provider focus on caregivers' as well as patients' needs, outreach to homeland and solitary caregivers, initial preparation of caregivers for unfamiliar role responsibilities, continued monitoring of home caregiving situations, and reevaluation of current restrictive financial guidelines for care at home for the terminally ill elderly.
Subject Area
Gerontology
Recommended Citation
HOULIHAN, MARY MURRAY, "FAMILY CAREGIVERS OF THE TERMINALLY ILL ELDERLY AND THE TERMINAL ILLNESS HOME CARE EXPERIENCE" (1986). ETD Collection for Fordham University. AAI8701900.
https://research.library.fordham.edu/dissertations/AAI8701900
