Abstract 69: Stroke Family Caregiver Perceptions of Palliative and End of Life Care Needs

Background: The purpose of palliative care is to reduce suffering and improve the quality of life of patients with serious illness and their families. Deaths and disability from stroke are anticipated to continue to increase because of the aging population. The palliative and end of life care needs for stroke survivors and their caregivers require greater attention. Purpose: To describe stroke family caregiver perceptions of palliative and end of life care needs as they provided care for survivors who died within one year post-stroke. Methods: A subset of stroke caregivers enrolled in the Telephone Assessment and Skill-Building Intervention Study (TASK II) (NINR R01# NR010388) were analyzed for self-identified needs and concerns during the year before the survivor’s death (n=12). Caregivers averaged 58 years of age (Range 26-75), and most were female (75%), white (58%), and spouses (66%) who provided an average of 11 caregiving hours/day (Range 2-24). Stroke survivors were 50% female with a mean age of 71 years (Range 50-90). A qualitative content analysis of audio-recorded telephone interviews was performed and combined with caregiver descriptive data on needs and concerns. Results: The most frequently identified needs focused on the survivor’s care were managing medications (n=8; 67%), communicating with the survivor (n=6; 50%), getting the survivor to eat (n=3; 25%); and dealing with the survivor’s thinking and emotions (n=3; 25%). The most frequently identified needs focused on the caregiver’s own needs included managing their own emotions (n=6; 50%); taking care of their own health (n=5; 42%); managing cost of care (n=5; 42%); dealing with other things within one’s life (n=4; 33%); and finding books or resources that help (n=3; 25%). Conclusions: Palliative and end of life care should focus both on the survivor’s care, as well as the caregiver’s own needs. The caregiver’s perception of palliative and end of life care needs will become increasingly important in today’s health care system and will provide important areas to consider for future palliative and end of life care interventions. Further research is warranted to further explore palliative and end of life care needs from the perspective of stroke family caregivers.