Galvão, Cristina and Brearley, Sarah and Swarbrick, Caroline (2022) Developing end-of-life care at a Portuguese nursing home through participatory action research. PhD thesis, Lancaster University.
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Abstract
Background: Nursing homes are places where older people live and often die but little is known about the needs of those who care for them, in Portugal. Aim: to identify the needs of nursing home staff when caring for older people at the end of life; to understand the cultural nuances of providing care at the end-of-life in nursing homes; to develop, with nursing home staff, a culturally appropriate programme that meets their needs; and to plan for future development. Methods: Participatory Action Research was used to identify needs and to develop interventions, designed by the staff themselves, aimed at improving care. Up to ten nursing home staff participated in a six-cycle research process, with data collected, analysed, and used in sequential plan-act-reflect steps. Findings: The silence that surrounds a resident’s death has a severe impact on the lives of those who survive him/her. Lacking competencies in grief management, and with no emotional and relational space to express grief emotions, staff strive to manage their loss, while trying to support other residents. Acknowledging the existence of death and its impact on nursing home life made the invisibility of death and mourning visible, and interventions possible, providing closure to all. Conclusion: The impact of death and dying on nursing home life needs to be recognised. If adequately supported, nursing home staff can develop strategies to manage grief and mourning, to improve their knowledge of the residents’ needs and wishes, improve communication among staff, and ultimately improve care.