A FAMILY EXPERIENCE: HOSPICE SUPPORTED HOME CARE OF A DYING RELATIVE.
Contributors: University of Rochester.
Published: 1989
Number of pages: 253
Subjects: Health Sciences, Nursing.
Description: Hospice is a rapidly growing alternative of palliative care for terminally ill oncology patients and their families and most often relies on families to assume caregiving responsibilities. However, minimal systematic research has focused on families' experiences during this difficult time. The purpose of this qualitative study was to generate a detailed description and theoretical analysis of family members' experiences caring for their relative during the terminal phase of a cancer illness in a hospice supported home care setting.

Ethnographic field techniques of semi-structured interviews and participant observation were used to examine the subjective reality of this experience from participants' points of view. Fourteen family members from 10 different families were followed monthly during their caregiving experience with a final interview three weeks after their relative's death. Subjects represented a variety of ages and relationships to their dying relative. Interviews per family ranged from two to ten. Participation ranged from two to 12 months.

Content analysis of transcriptions of tape recorded interviews and field notes was conducted. Data were coded for themes and processes that emerged over the course of data collection. Scientific rigor was based on four criteria: credibility, applicability, consistency, and confirmability.

Managing the caregiving experience emerged as the core category and was composed of four phases: confronting reality, surveying the options, immersion, and refocusing. Confronting reality described circumstances that lead to families' recognition of their relatives' terminality. In surveying the options families searched for a site for terminal care that was congruent with their personal values about how people should be treated. During immersion families disengaged from previous responsibilities to focus on implementing the caregiving role and encountered a complex array of stresses that lead to the use of multiple coping techniques. In refocusing, several families found it necessary to exit the caregiving role before their relatives' death and refocus on a new managing process.

Future research should consider factors in the health care community that might improve hospital experiences and facilitate the transition to home care for the terminally ill. Further examination of family variables as well as programmatic variables of hospice organizations is warranted. Consequences of the caregiving experience for those who remain in the caregiving role and those who experience the refocusing phase need to be addressed.
Notes: Source: Dissertation Abstracts International, Volume: 50-04, Section: B, page: 1325.

Thesis (PH.D.)--THE UNIVERSITY OF ROCHESTER, 1989.

School code: 0188.