| Description |
Care transitions for elderly family members enrolled in hospice care to and between home, Assisted Living Facilities (ALF), and Nursing Homes (NH) are fraught with distressing emotions and suffering for both the elderly persons and their families. The purpose of this study was to explore how bereaved families, after the death of their loved one, experienced and perceived these care transitions. Hospice nurses also participated in the study, to provide their perceptions of the end-of-life transition. Glaserian grounded theory (GT) was used to systematically generate theory from the data. Thirty-nine unstructured interviews were conducted with family members (n=14), hospice nurses (n=13), an ALF nurse (n=1), and social workers (n=2). Additional interviews were conducted with family and hospice nurses (n=5) and theoretical group interviews were also conducted (n=4). Data were coded using interpretive, axial, and selective coding. Analysis commenced concurrently utilizing GT principles of constant comparative method as well as memoing. A theoretical model was developed of the stages of the basic social psychological process of Living Through Care Transitions of the Dying Elderly: The Changing Nature of Guilt in Family Caregivers. Findings indicated that guilt escalated during the initial stages of the transfer, and was mitigated by achieving what family members deemed as a "good" death. The experiences and perceptions of the hospice nurses were identified during each phase of the care transition. Results revealed the hospice nurses role in alleviating guilt iv for the family caregivers was by supporting the transition through advocating, navigating the complexities of both facility systems and families, and especially coaching during the dying process, which was seen as the critical support for families during that stage. The findings provided new insight into the nature of guilt and its resolution in bereavement through the attributes of a "good" death. If a "good" death was not achieved, guilt appeared to linger; however, this needs further study. Furthermore, findings also provided educational stage-specific implications for hospice nurses supporting family caregiving through difficult care transitions. Implications of this research also highlight significant issues that affect families caring for older adults that can influence public policy. |
