Lost voices in an aged care system gone wrong: A narrative inquiry

Aim: The aim of this study was to better understand adult children’s experiences in shared decision-making (SDM) concerning their parents’ care in residential aged care facilities (RACFs). Background: Adult children who have a parent in a RACF want to be involved in the many decisions about their parents’ health and health care over time. Involving adult children in SDM can promote autonomy, trust, and feelings of inclusion in the continued life of their ageing parent. However, despite SDM being an integral part of a patient-centred approach to nursing care since the 1990s, often this is not a reality in RACFs. When adult children are not included in the care and decisions based on their parents’ health care, they are often left feeling angry, frustrated, and powerless. Adult children who have a parent in a RACF only need to experience a one-off incident of exclusion of SDM or witnessing substandard care of their parent for it to have a lasting traumatic effect upon them. RACFs provide the ideal environment for such incidents to flourish, particularly since they are places where power/authority differences are commonplace. This, in turn, can seriously affect the quality of care provided for older people and ultimately dictate the adult child’s mental health, well being, behaviour, and reported experience of pain and hurt even years after their parent/s has passed away. Research design: Narrative inquiry was the chosen methodology to examine SDM experiences of adult children. Through storytelling, the participants—adult children who had a parent in RACF—voiced their views of their experiences regarding SDM about their parents’ health and well-being. Through the iterative process of the telling and retelling of the narratives, the adult children’s voices were heard. Data Collection and Analysis: Ten adult children from five states in Australia were interviewed. Data collection consisted of semi-structured interviews, analytical memos, and field notes. Transcribed data were thematically analysed using Braun and Clarke’s (2006) six-phase process. To provide structure to the analysis process and construction of narrative texts, Clandinin and Connelly’s three-dimensional space framework was applied. Findings: The three themes that emerged describe the challenges of SDM for adult children were: (1) (Mis) trust; (2) (Mis) placed responsibility; and (3) Past hurts still hurt. A trauma-informed model of care was devised utilising these themes. Conclusion: The trauma-informed care framework developed from the findings highlights the uniquely powerful role aged care services providers can play to reduce the long-term psychological impact of traumactic experiences of adult children in RACFS. This framework is significant because their concerns and traumatic experiences are observable, providing a clear and visible understanding of what it means to be an adult child who is excluded from informed decision making in relation to the health and well-being of their parent. I contend that instilling a trauma-informed framework for adult children into aged care services and policies has the potential to build an alliance within the aged care sector; it would go some way to addressing the disconnects that currently exist. Thus, providing a cohesive approach involving all relevant stakeholders will greatly improve the health and well-being outcomes for the parent. Keywords: Shared decision-making, registered nurses, adult children, narrative inquiry, trauma, trauma-informed care, RACFs.