The start of the modern hospice movement 40 years ago has focused the attention of researchers on the emotional and spiritual needs of terminally ill patients. Less attention has gone to meeting the needs of family members of the patients, who are often the ones providing care. But a faculty member at the Mandel School of Applied Social Sciences is helping to fill that gap.

Aloen Townsend, associate professor at the Mandel School, recently received a two-year, $65,000 Social Work Leadership Development Award from the Project on Death in America (PDIA)-part of the Open Society Institute-to improve ways of assessing the needs of families providing care to dying relatives.

The project, "Family Assessment Collaboration to Enhance End-of-Life Support (FACES) is being developed in association with the Hospice of the Western Reserve (HWR).

"When people are terminally ill, they naturally become the focus of attention for most of the care-giving professionals," Townsend said. "But we also need to find ways to help family members. The concern is that if issues resulting from the stress of caring for a dying relative aren't identified early on, they can lead to bigger problems during this final care-giving period and after the person has died."

Townsend and her fellow researchers at Case and HWR are beginning by reviewing the existing literature on family caregiver strain, a process already well under way. Based on that review, they are developing a tool tailored to end-of-life care. They will test the tool through in-depth interviews with primary family caregivers, who will be drawn from families receiving hospice services through HWR.

"Our goal is to create a brief questionnaire that HWR will make a routine part of their initial assessment for families seeking hospice care," Townsend said. "We hope to share it with other hospices and palliative care settings, and to identify future research directions to better understand the needs of families in this situation."

Townsend said the questionnaire that is developed also will measure positive experiences that come from caring for a dying patient.

"Sometimes it brings families closer together or strengthens the spiritual beliefs of the surviving family members," she said.

The project is due to be completed at the end of 2004.

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