Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth,…

Background: Following a series of fatal choking incidents in one UK specialist service, this study evaluated the detail included in incident reporting. This study compared the enhanced reporting system in the specialist service with the national reporting and learning system. Methods: Eligible reports were selected from a national organization and…

Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement. Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process…

The critical role of Certified Nursing Assistants (CNAs) to help elderly nursing home residents' move through declining conditions or diseases to death is salient. It is important for CNAs and nursing home leaders to understand CNAs' attitudes, fears, and anxieties toward death and dying. The quantitative study investigated CNA's…

Purpose: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on…

Purpose: To identify differences in perspectives that may complicate the process of joint decision making at the end of life, this study determined the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care/assisted living communities and whether family and staff roles, involvement in care,…

Using evidence gathered during 18 months of participant-observation in 2 nursing homes and 65 interviews with staff, this article examines how nursing-home staff use agency as a rhetorical resource to construct a dignified workplace. Staff attribute agency to dying residents, saying they choose the timing and conditions of their death. Staff…

The case of Mrs. Terri Schiavo illustrates common themes in family caregiving at the end of life but is distinctive from most family caregiving situations in other ways. As occurred in Mrs. Schiavo's case, family members do act as both caregivers and decisionmakers for their loved ones at the end of life, often without the benefit of written…

Purpose: Longitudinal research in dementia has acknowledged the importance of transitions during the course of family caregiving. However, long-term adaptation to institutionalization has received little attention. This study attempts to describe caregivers' adaptation (changes in stress, well-being, and psychosocial resources) to placement up to…