RESEARCH

Because there is a rather small research base examining psychosocial issues near the end of life, and there is even less information on the most effective ways to help people who are dying and their loved ones, the Working Group has an active research program.

The projects currently underway or in the planning process include:

Assessing end-of-life decisions

We have developed a comprehensive model that allows for the examination and integration of the biopsychosociospiritual aspects of a person's life, which can aid in identifying areas where intervention may be able to improve the quality of life of a dying individual and his or her loved ones (both before and after the person dies). We are currently examining the utility of the model in a series of cases.

Faith as a coping mechanism

Many members of the Working Group have an interest in how faith (which for us includes religion, spirituality, as well as existential beliefs) affects the ability and way that people cope with end-of-life situations. We are discussing research possibilities with local hospitals, hospices, and provider training programs.

Qualitative comparison of dying and non-dying individuals and loved ones

There is relatively little research involving people who are actually terminally ill and their loved ones. We have found none that includes a control group and utilizes both a longitudinal and qualitative approach. We are currently working with a local hospice and HIV service organizations to conduct such a study.

Optimal dying

We are in the process of planning a study that will allow us to identify what people consider to be the optimal dying experience by interviewing terminally ill individuals, loved ones, and professional caregivers. We will follow the dying persons and significant others longitudinally to assess what facilitated or prevented the achievement of an optimal dying process and death.

Expert hospice professionals

This idea was brought to us by one of our collaborating agencies. We are conducting an exploratory investigation of what makes a hospice nurse an "expert" as judged by peers, supervisors, and support staff. This qualitative/quantitative study is the first in what we believe will be a set of studies involving hospice professionals.

All of our research is designed to have immediate effects on direct service. We also design our projects in collaboration with organizations and individuals providing service to, and/or conducting research with, persons who are near the end of life and their loved ones. We therefore consider ourselves to be involved in participatory action research and welcome opportunities to collaborate with others involved in such endeavors.

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Last modified: 1-February-01