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Evaluation & the Health Professions
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Terminally Ill Patients' and Families' Responses to Participation in a Research Study

Susan Masterson-Allen

Linda Laliberte

Brown University

Susan M. Wright

Hebrew Rehabilitation, Center For the Aged

Kenneth Hepburn

Veterans Administration, Medical Center, Minneapolis

Winnifred Veale-Danner

LongTerm Care Ombudsman, Program, Los Angeles

Vincent Mor

Brown University

John N. Morris

Hebrew Rehabilitation, Center for the Aged

Evaluations of the effect of interventions on the terminally ill focus on outcomes such as patient satisfaction and quality of life. Due to the theoretical nature of these measures, researchers must rely on patients andfamily members asprimary data sources. Family members of terminally ill patients were queried concerning their motives for participation in the National Hospice Study and their reactions to an intensive interview schedule. Of those contacted, 94% agreed to the interview. The most frequently cited reasons for participating in the study were the desire to help other families facing a serious illness and the desire to help the hospice movement. Responses indicated a real enthusiasm for study participation in spite of the stressful nature of the terminally ill patient's situation.

Evaluation & the Health Professions, Vol. 8, No. 1, 83-92 (1985)
DOI: 10.1177/016327878500800107
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This article has been cited by other articles:


Home page
 AM J HOSP PALLIAT CAREHome page
M. P. Kaplan and P. M. O'Connor
The effect of Medicare on access to hospice care: Patterns of eligibility requiring the availability of a primary care person
American Journal of Hospice and Palliative Medicine, November 1, 1987; 4(6): 34 - 42.
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