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ABSTRACT
Little is known about how patient and family engagement manifests in home hospice care. This qualitative study included interviews and observation of home hospice care with 18 patients, 11 caregivers, and 26 hospice workers in the United States. Structural factors (e.g., home setting, ample time, personal relationships), hospice worker strategies (e.g., patient education and presenting choices), and family member support facilitated engagement. Barriers to engagement included difficult relationships and unavailable or unwilling family members. Home hospice care demonstrates potential strategies for continuous, informed, and holistic engagement. These engagement strategies may translate to other arenas of health care.
Acknowledgements
Thank you to John H. Evans and Ming Tai-Seale for manuscript guidance.