Title

End-of-life care in residential aged care: The perceptions of bereaved family members

Author Identifiers

Sushma Bhandari Kunwar

https://orcid.org/0000-0002-9586-7488

Date of Award

2022

Degree Type

Thesis

Degree Name

Master of Nursing (Research)

School

School of Nursing and Midwifery

First Advisor

Rosemary Saunders

Second Advisor

Caroline Vafeas

Abstract

Background

In recent years, life expectancy has increased causing a higher global percentage of older people living with multiple chronic health problems including dementia. This increase in the aged population with complicated health issues has required governments and health care systems internationally to provide suitable accommodation and health care support such as residential aged care facilities. In residential aged care facilities comprehensive and holistic health care and assessment should ensure good quality of life and a supported death. The Australian Royal Commission into Aged Care Quality and Safety (2021) recognised a need for improvement in the residential aged care sector highlighting end of life care as a core business in aged care. Little research has been completed to explore the family perspective of end of life care provided in the residential aged care setting.

Methods

This study used an inductive interpretive research method to explore participants’ experiences of their relatives’ end of life care within two residential aged care facilities in Western Australia. Two facilities assisted with the recruitment of participants (n=5) and provided letters of support, and one participant (n=1) was recruited via an advertisement and did not disclose the facility. Fifty one potential participants from two residential aged care facilities were invited to participate in the study, with (n=5) family members agreeing. Qualitative data collection was undertaken using semi-structured face to face individual interviews with six participants utilising predesigned interview questions. The interviews were conducted in the aged care facilities’ meeting rooms (n=5), and Edith Cowan University’s meeting room (n =1) with each interview lasted for approximately 60 to 90 minutes. The eight Principles for Palliative and End of Life Care in Residential Aged Care from Palliative Care Australia were applied as the conceptual framework for the study.

Results

Through the analysis of data collected from participants, two themes and subthemes were identified about their experiences during the end of life care period of their family member. Family reflecting on care described their experiences of personal care, emotional and spiritual care, symptom management, grief and bereavement, and concerns about care. Providing a supportive environment was related to the palliative care plan, involving families in care, care delivery, staff communication with family, and the physical environment. Families generally observed and expressed satisfaction to the emotional and spiritual care, and to some degree to personal care and pain management. Additionally, most of the families stated that the physical environment of the facility was appropriate, however, key aspects of care highlighted for improvement included bereavement support, and the need for improved communication with families, and in providing timely information. Participants further observed that care staff were attentive, however, two participants mentioned that their expectations of professional behaviour was not met by all staff as they experienced poor communication from a few staff and one participant perceived a personality clash with care staff member.

Conclusion

This thesis explored the end of life care in Australian residential aged care facilities from the perspective of bereaved family members using a qualitative interpretative methodology. Findings from this study suggest that bereaved families perceived personal, emotional and spiritual care of the residents as satisfactory. Similarly, medication and pain symptoms management were observed to have met most of the families’ expectation. Additionally, emotional, psychological and religious supports was offered to the residents and their family, and they were involved in care discussions and decisions. Issues in communication and post death support and a lack of awareness to the cultural sensitivity were the key aspects identified for improvement.

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