Staff perspectives on the provision of end-of-life care in a community residence for older adults with developmental disabilitiesedit
Objective: The purpose of the study was to describe the perceptions of community residence (CR) staff who have cared for older adults with developmental disabilities (ADDs) that are at the end of life. Design: This exploratory, descriptive study utilized qualitative methods that involved semistructured interviews with CR staff members. Setting: The setting was a CR that was also an intermediate care facility (ICF) that provided 24-hour residential treatment for medical and/or behavioral needs. At least one registered nurse was present at all times. A CR with at least one resident who was over the age of 40 and had a diagnosis of a life-limiting illness was chosen. Participants: Participants included three frontline workers, four managers, and one registered nurse. Methods: In-person interviews included open-ended questions about end-of-life care for older ADDs. Demographics such as age, length of time working with ADDs, and education were analyzed using descriptive statistics. Descriptive statistics were used to analyze demographics such as age, and length of time working with ADDs. Interviews were digitally recorded, transcribed, and analyzed using grounded theory techniques. Results: Four themes illuminated unique elements of the provision of end-of-life care in a CR: (1) influence of relationships, (2) expression of individuality, (3) contribution of hospice, (4) grief and bereavement, and (5) challenges to end-of-life care. Conclusion: The results provided insight into the unique needs of older ADDs at the end of life and how this influences their care. Emphasis was also placed on the importance of specialized care that involved collaborations with hospice for older ADDs who remain in a CR at the end of life.