Abstract
The purpose of this mixed-methods study was to explore the strain experienced by family caregivers of nursing home residents who died in a nursing home. Because 1 of 3 people older than 85 years will likely spend a portion of their remaining lives in a nursing home and 1 in 4 Americans will die in a nursing home, improvements in end-of-life care are essential. Family caregivers play a significant role in supporting care to residents, and most remain very involved in the lives of their loved ones following placement in the nursing home. A concurrent mixed-methods research design was used in which family caregivers participated in a semistructured interview containing both the Robinson Caregiver Strain Index and open-ended questions. The mixed-methods analysis revealed additional sources of caregiver strain and distress in this population beyond those assessed by the Caregiver Strain Index. Included are loss of the older adult's dignity, lack of communication from staff, instances of poor-quality care, residents' symptom distress, and hospice care not offered. The knowledge gained through this investigation will help researchers and clinicians more comprehensively assess family caregiver strain during palliative and end-of-life care in nursing homes.