Terminally ill patients' and families' responses to participation in a research study

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 and family members as primary data sources. Family members of terminally ill patients wee 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.