FAMILY ASSESSMENT COLLABORATION TO ENHANCE
END-OF-LIFE SUPPORT
(FACES)
Principal Investigator:
Aloen L. Townsend, Ph.D. (Case
Western Reserve University)
Co-Investigators:
Karen Ishler, M.A. (Case
Western Reserve University)
Carol Matthews, MSN, APRN (Hospice of the Western
Reserve)
Elizabeth Pitorak, MSN, APRN (Hospice of the Western Reserve)
Beth Shapiro, MSSA, LISW (Hospice of the Western Reserve)
Elizabeth
Vargo, MSSA, LISW (Hospice of the Western Reserve)
Funded by a Social Work Leadership Development Award from
the Project on Death in America
(an initiative of the Open Society
Institute, part of the Soros Foundations)
Families are an essential source of support for most adults facing death
and, along with the terminally ill individual, the focus of hospice and
palliative care services. The end of life confronts families with some of
the most emotionally challenging transitions they may ever have to face.
The ways in which the family responds can have profound consequences for family
members' subsequent grief and interpersonal relationships. The family also
can have a major impact on the dying individual's quality of life and
interactions with service providers.
This two-year research project (January 2003 - December 2004) was an
academic-community partnership between a graduate school of social work, the
Mandel School of Applied Social Sciences at Case Western Reserve University, and
a nationally-renowned practice site dedicated to quality end-of-life care,
Hospice of the Western Reserve. The goal was to enhance end-of-life care
through improved assessment of family caregivers' needs. The FACES project
was designed to address a critical gap: the lack of clinically relevant and
scientifically sound measures for assessing family caregiver strain and
resources near the end of life.
A set of 23 Likert-type statements were developed and pretested for the
project, based on a review of existing instruments for measuring family
caregiver strain and resources and the extensive clinical experience in hospice
care of the HWR research team members. Face-to-face interviews were
conducted with 162 primary family caregivers whose relatives, age 65 or older,
were receiving hospice home care services from Hospice of the Western Reserve
(HWR). "Family" was defined broadly, to include close friends and partners
as well as relatives. Caregivers responded to structured questions
regarding their physical, emotional, social, financial, and spiritual strain;
their general perceptions of the caregiving situation; and their internal and
external resources. Interviews were conducted by 18 HWR home care social
workers, as part of an initial psychosocial assessment. The social
workers also provided their assessment of the tool's clinical utility, through a
mail questionnaire and a focus group.
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