Staff and Proxy Views of Multiple Family Member Involvement in Decision Making for Nursing Home Residents With Advanced Dementia.

Decision making for nursing home (NH) residents with Alzheimer disease and related dementias often involves input from multiple family members and NH staff to address goals of care at the end of life. Using data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life research study, a secondary analysis of qualitative data was conducted involving interviews of 144 NH staff and 44 proxies in 14 NHs to examine the perspectives of NH staff and proxies for NH residents with Alzheimer disease and related dementias on the involvement of multiple family members in decision making about end-of-life care decisions. Interviews took place between 2018 and 2021.

Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.

Background: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood.

Materials And Methods: Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations.

Systematic Review Revisited, 2010-2020: The Effect on Surrogates of Making Treatment Decisions for Others.

This study mapped research evidence spanning the last 10 years to identify the effect of being a surrogate decision maker for an incapacitated adult. A scoping review strategy was employed to allow for a focus on the breadth of the effect of surrogate decision making and to identify gaps in the existing research literature. Surrogate decision making created emotional distress and burden for the majority of the SDMs.

Guilt as an Influencer in End-of-Life Care Decisions for Nursing Home Residents With Advanced Dementia.

The concept of guilt has been studied in the context of caregivers of older adults with advanced dementia, usually describing the feelings a person has of placing a loved one in a long-term care facility; however, little research has been done to understand how nursing home staff and proxies for older adults with dementia describe guilt as a decision-influencer in end-of-life care. For the current study, private, semi-structured interviews were conducted with 158 nursing home staff and 44 proxies in 13 nursing homes across four demographic regions in the United States. Interviews were reviewed and analyzed for how the concept of guilt was perceived as a decision-influencer.

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

Background/objectives: Studies of interpersonal trust within nursing homes (NHs) is limited. This study aimed to describe the perspectives of interpersonal trust in NH staff among family caregivers of residents with advanced dementia. Additionally, comparisons of Black and White caregivers' perspectives were also explored.

Psychometric Properties of the Chinese Version of the Surrogate Decision-Making Self-Efficacy Scale.

Surrogate decision making for patients in the intensive care unit (ICU) can have negative physical and emotional health consequences for the decision-maker. Improving confidence and self-efficacy may reduce these consequences, but a valid instrument is necessary for reliable measurement. Using a cross-sectional design, the current study aimed to translate the Surrogate Decision-Making Self-Efficacy Scale (SDM-SES) into Chinese and evaluate its psychometric properties for surrogate decision-makers (SDMs) of patients in the ICU.