Background: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of…

Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual…

Working in unfamiliar contexts and often alone, fieldworkers may face challenges for which their training and previous experience has not prepared them. While there is literature about the technical, ethical and moral aspects of fieldwork, there is little focusing on fieldworkers' actual experiences. Additionally, there is little constructive…

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,…