Latest Australian research

Wijeyaratne L, Spruijt O, Jayasinghe S, Kane S, Ramadasa U, Philip J.

Introduction: To deliver palliative care, it is important to understand what a "good death" means to the relevant people. Such studies have mostly occurred in high-income settings that usually live by Western ideals. What matters to people is likely to vary across different regions of the world, influenced by multiple factors. Although there is a great need for palliative care in South Asia, there is a lack of comprehensive understanding of what a good death means in this setting. This study aimed to increase understanding of what is considered a good death in South Asia.

Design: Systematic review and narrative synthesis.

Method: A systematic search was conducted across eight databases, an Advanced Google search, and a bibliography search of selected articles. A data-based convergent synthesis was performed, along with quality appraisal.

Results: Twenty-five empirical studies were selected for analysis from India, Pakistan, Bangladesh, Sri Lanka, and Bhutan. Four themes emerged. Mutual care and connection support a continued sense of self: contributing to others, while receiving connection through relationships and spiritual practices, was important for patients and supported by families and healthcare workers. Freedom to choose-privilege or burden?: the choice to participate in care was necessary for some patients but a burden for others, who preferred the family to lead their care. Severe uncontrolled pain and financial distress precluded choice for some patients, who felt death was the only option. Decisions regarding artificial prolongation of life were complex for patients and healthcare workers. Opportunities in the last days: when actively dying, there was general agreement on the importance of being pain-free, feeling safe, and having family present. Home was not always the preferred place of death. For family, it was critical to perform last rites. After death matters: What happens after death-influenced by leaving a legacy and religious beliefs-affected all parties before, during, and post-death.

Conclusions: To our knowledge, this is the first review of what a good death means in South Asia. There is a dearth of research from most South Asian countries. Although the South Asian perspective has similarities with the Western perspective, we note important nuances around decision-making, prolongation of life, prognostic awareness, and wanting to end one's life, moderated by culture, religion, and poverty. We support policies that account for these variations. Ongoing work is required to provide good symptom management, thus increasing opportunities for patient participation in care. Further research is needed in areas of ethics and religion at the end of life in South Asia.

Chi J, Krysinska K, Andriessen K.

Abstract: Experiencing the death of a loved one is a stressful and disruptive event that can have short-term and long-term detrimental effects on the grief, mental health, and social functioning of the bereaved individuals. Grief camps represent a relatively novel form of support. However, little is known about their effectiveness. The systematic review (PROSPERO: #CRD42024547094) adhered to the PRISMA guidelines and aimed to investigate the effectiveness of grief camps on the grief and psychosocial functioning of participants. Searches in six databases (Medline, Scopus, Web of Science, PsycINFO, Embase, CINAHL) identified 31 relevant studies published between 1991 and 2022. Narrative synthesis of the study findings indicated a positive impact of grief camps on the grief and psychosocial functioning of bereaved individuals, and participants' feedback indicated that grief camps are an acceptable intervention. Further research in various locations and across different age groups may broaden our understanding of the effects of grief camps.

Javanparast S, Tieman J.

Background: Palliative care needs rounds have been introduced to improve palliative and end-of-life care in residential aged care homes. As part of the Australian Government initiative 'Comprehensive Palliative Care in Aged Care Measure', needs rounds have been trialled in seven metropolitan and fifteen regional/rural aged care homes in South Australia. This qualitative study examined stakeholders' perspectives about potential values and factors that facilitate or hinder the implementation and sustainability of needs rounds.

Methods: A qualitative approach was employed by using individual interviews and focus groups. Semi-structured interviews (n = 13) were conducted with executives, project team members and staff from both sites. Additionally, four focus groups were facilitated in regional/rural sites (n = 10) to further unpack specific elements of needs rounds' model that were tailored based on their needs. The interview and focus group data were recorded and transcribed verbatim. The transcripts were transferred into the qualitative data management software NVivo (version 14) for coding and analysis. Guided by a coding framework, thematic analysis was undertaken.

Results: Participants found palliative care needs rounds valuable in providing a structured approach to improving palliative care planning and enhancing workforce knowledge and confidence in identifying and managing care towards the end of life. Access to telehealth facilitated needs rounds participation, especially in regional/rural areas. Comparing the nurse practitioner with the medical consultant led needs rounds revealed that there is no 'one size fits all' approach with advantages and disadvantages for each model. Successful implementation of such a model depends on the context within which needs rounds are implemented such as organisational needs, capacity and infrastructure, geography, and resources. Organisational commitment to palliative care, preparedness for change, strong leadership and financial support, and access to online platforms were noted as key factors enabling successful implementation of needs rounds.

Conclusions: Palliative care needs rounds can contribute to improving organisational culture and workforce knowledge in palliative and end-of-life care. Policy commitment and financial support to adopt and tailor palliative care needs rounds that meet local needs are highly recommended.

Wand A, Karageorge A, Zeng Y, Browne R, Sands M, Kanareck D, et al.

Purpose: To examine the attitudes, experiences, and perceived facilitators and barriers to Advance Care Planning (ACP), of older people with schizophrenia and other psychotic illness and their carers.

Methods: Older people with a psychotic illness and carers were recruited from public mental health services in Sydney, Australia. Semi-structured interviews to explore attitudes, experiences, and perceived barriers and facilitators to ACP were conducted by an external clinician. Consumers' medical, psychiatric and drug health diagnoses were recorded and they completed cognitive and symptom rating scales. Reflexive thematic analysis was used to analyse the transcripts of interviews, within an interpretive description framework.

Results: Thematic saturation was achieved with 12 consumers and 5 carers. Emergent themes from consumer interviews were (i) 'What is ACP?'; (ii) 'I have not done ACP because…..'; (iii) 'I want to do ACP'; (iv) 'If I was to do ACP I would need..'; and (v) 'Mental health clinicians have the skills to help me with ACP'. Carer themes included (i) 'We do not participate in ACP', (ii) 'I want to participate in ACP', and (iii) 'Key clinician skills are needed'. There was convergence of themes from both groups.

Conclusion: This study demonstrates that older people with a psychotic illness can express views regarding ACP, despite ongoing symptoms of psychosis, cognitive impairment and mild-moderate severity of illness. The emergent themes highlight opportunities to intervene to overcome barriers to ACP, including education for both participant groups and clinicians, practical considerations and the need for all to collaborate, including with primary care.

McLaughlan R.

Abstract: Following a 3-year long research project that gathered 146 views, including those of palliative care patients, family members, medical staff, administrators, architects and government representatives, this paper explores the hypothesis that motivated this work; a hunch that the built environment affects us most during times of intense vulnerability. Of these 146 people, only a small handful could provide insight relative to the experience of occupying hospital spaces as a loved one nears the end of life. This article honours these stories and discusses them in relation to my own observations and experiences. The article is thus part observation, part participant interview, part autoethnography. Findings already published from the broader study have spoken to the importance of fresh air, access to nature, spaces for spending time with family, as well as alone, and ensuring people feel comfortable to enact rituals of home within the hospital. Yet the accounts discussed here are different. They speak to the subtle ways that hospital environments communicate when emotions are raw, and people are at their most exhausted. They speak to the ways that aesthetics are felt; and make evident that notions of homeliness must encompass far more at the end of life. A sense of welcome is not a nicety but a need, as is comfort, and what might be termed 'imaginative respite'-the idea that the built environment might somehow alleviate the focus on an unbearable reality. These accounts speak to the difficulty of navigating grief, and a hopeful expectation that the built environment might somehow soften the edges of this experience. In focusing on these stories, this article contributes a deeper understanding of what is really at stake when we design for palliative care.