Trust of Nursing Home Staff Caring for Residents with Advanced Dementia: A Qualitative Descriptive Study of Family Caregivers’ Perspectives

Family caregivers for persons with dementia are often faced with the difficult decision to place their loved one in the care of a nursing home (NH). This decision is complicated by historical accounts of NH’s poor quality of care. Family caregivers’ trust of NH staff is key to both the successful transition to this care environment and the potential mitigating effect of caregiver burden throughout the length of stay. Yet, little is known about the family caregivers’ perceptions of trust of NH staff. The goal of this dissertation was to describe the family caregivers’ perspectives of interpersonal trust in NH staff caring for residents with advanced dementia. The study design combined a secondary data analysis of qualitative data from the ADVANCE (Assessment of Disparities and Variation for Alzheimer’s disease Nursing home Care at End of life) study with a qualitative descriptive method in order to answer the questions: “What are the family caregivers’ perspectives of interpersonal trust in NH staff caring for residents with advanced dementia and do family caregivers’ perspectives of interpersonal trust in NH staff caring for residents with advanced dementia vary between Black and white family caregivers?” Forty-four family caregivers were interviewed, 19 identified as Black and 25 identified as white. Reviews of current literature on trust in NHs and the effect of surrogate decision making informed the secondary data analysis. Family caregivers’ perspectives of interpersonal trust of NH staff were categorized into three themes: (1) complete trust, (2) complete mistrust, and (3) differential mistrust. Knowing these family caregivers’ perspectives of trust has important implications for practice and may inform tools to measure interpersonal trust between family caregivers and healthcare staff.