Friday, 14 January 2005 - 8:00 AM

This presentation is part of: End-of-Life Perspectives: Family and Elders

Assessment of Family Caregiver Strain During End-of-Life Hospice Care

Purpose: Medical advances and the “graying” of the American population have increased the numbers of families who will provide care to older adults with life-threatening conditions. The ways in which families respond can have profound consequences for family members’ adjustment and the dying individual’s quality of life. Yet, few tools exist to assess family caregiver strain near the end of life. The goal of this study is to improve end-of-life care through improved assessment of family caregivers’ needs. The study is funded by a Social Work Leadership Development Award from the Project on Death in America.

Methods: The “Family Assessment Collaboration to Enhance End-of-Life Support” (FACES) is a collaboration between the Mandel School of Applied Social Sciences at Case Western Reserve University and Hospice of the Western Reserve. A multidisciplinary research team reviewed existing tools for measuring family caregiver strain and strengths. A set of 23 Likert-type statements were adapted or created to tap caregivers’ self-reported strain in multiple domains and psychosocial resources (e.g., spirituality, social support). Additional items (structured and open-ended) assess background characteristics of caregivers and patients and caregivers’ experiences. Hospice home care social workers are using the FACES tool, during the initial psychosocial assessment, to collect data from primary family caregivers of patients aged 65 or older. In later stages of the project, the social workers will evaluate the clinical utility of the tool and conduct follow-up interviews with caregivers. This presentation will report results from initial interviews with 90 caregivers.

Results: The tool takes 20 minutes, on average, to administer. Caregivers in our sample are primarily spouses (44%) or adult children/children-in-law (47%). Eighteen percent are African American; the rest are Caucasian. Average age is 61 for caregivers and 79 for patients. Patients’ most common diseases are cancer (68%), arthritis (50%), hypertension (48%), or heart disease (46%). Based on exploratory factor analyses and our conceptual model, five multiple-item scales were created: economic strain, role captivity, physical strain, psychological strain, and psychosocial resources. On average, caregivers reported moderate levels of economic strain (M = 4.49), physical strain (M = 6.97), and psychological strain (M = 7.40). For example, 49% reported feeling tired all the time and 40% reported feeling overwhelmed. Caregivers also reported a moderate level of role captivity (M = 6.32). For example, 37% reported feeling isolated. On the other hand, the mean level of psychosocial resources was high (M = 19.00). For example, 93% agreed that their values and beliefs allow them to keep a positive attitude. All four types of strain are significantly correlated, although to differing degrees. Also, greater psychosocial resources are significantly correlated with lower physical and psychological strain, and lower feelings of role captivity, but not with economic strain.

Implications for Practice or Policy: Results suggest the tool can help social workers assess caregiver strengths and identify specific areas of strain during end-of-life care. Such information can be used to develop plans of care for individual families, as well as agency initiatives and social policies to better support family caregivers.

See more of End-of-Life Perspectives: Family and Elders
See more of Symposium

See more of Celebrating a Decade of SSWR (January 13 - 16, 2005)