Latest Australian research

Kalla M, O'Brien T, Metcalf O, Hoda R, Chen X, Li A, et al.

Background: It is widely accepted that the COVID-19 pandemic has accelerated the era of online health care delivery, including within community palliative care. This study was part of a larger project involving a collaboration between universities, health care services, government agencies, and software developers that sought to enhance an existing telehealth (video call) platform with additional features to improve both patient and health care professional (HCP) experience in a palliative care context.

Objective: The aim of this study was to understand palliative care patients' and HCPs' experiences of telehealth delivery in a palliative care context in Victoria, Australia. For the purposes of this study, telehealth included consultations by both video and telephone calls. By better understanding users' experiences and perceptions of telehealth, we hoped to determine users' preferences for new telehealth enhancement features.

Methods: A total of 6 health care professionals and 6 patients were recruited from a major tertiary hospital network's palliative care unit in Victoria, Australia. Participants were asked to generate 3-5 photographs depicting their telehealth experiences. These photographs were used as visual aids to prompt discussion during subsequent one-on-one interviews. Intertextual analysis was conducted to identify key themes.

Results: A total of 3 overarching themes emerged: comfort (or lack thereof) afforded by telehealth, connection considerations in telehealth, and care quality impacts of telehealth. Patients (n=6) described telehealth as supporting their physical and psychological comfort and maintaining connection with HCPs, yet there were specific situations where it failed to meet their needs or impacted care quality and delayed treatment. HCPs (n=6) recognized the benefit of telehealth for patients but reported several limitations of telehealth, in particular due to lack of physical examination opportunities. Participants indicated that 2 types of connection were imperative for effective telehealth delivery: technical connection (eg, good internet connectivity or clear phone line) and interpersonal connection (ie, good rapport and therapeutic alliance between the HCPs and patients). Often technical connection issues impeded the development of interpersonal connection between the HCPs and patients in telehealth.

Conclusions: The findings presented in this study combined with other co-design activities, which are outside the scope of this paper, indicated the potential value of a telehealth enhancement feature that generates patient-facing clinical consultation summaries. Our team has developed a video telehealth enhancement feature (or "add-on"), which will enable clinicians to distill key actionable advice and self-management guidance discussed during teleconsultations for a take-home summary document for patients. The add-on's prototype has also been subjected to an initial simulation study, which will be reported in a future publication.

Lambert E, Gibson J, Bail K.

Aim: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care?

Design: Interpretative phenomenological analysis

Methods: The lived experiences of 11 care workers within the Australian Capital Territory and region who have cared for someone of a culturally and linguistically diverse background during end-of-life care were captured. Each care worker was interviewed individually and answered a series of semi-structured open-ended questions.

Results: Using interpretative phenomenological analysis, three group experiential themes were derived: (i) navigating cultural shock and death, (ii) the hard work of communication and (iii) searching for deeper connections with client and self. Within these were key elements: Care workers worked hard to embrace cultural diversity, but struggled to meet cultural needs, particularly in relation to the unpredictable timeline of dying. Care workers relied on themselves and their improvisation, but experienced self-blame for inadequate care and unexpected challenges in communication. Blurred boundaries in relation to therapeutic relationships were apparent, and care workers felt alone with emotional burden, but also found belonging and joy in their work.

Conclusion: Care workers' experiences are vital to understanding the barriers and challenges in providing culturally appropriate end-of-life care. Care workers repeatedly experienced an emotional burden and vicarious trauma throughout their work in this field. Care workers were self-reliant in all aspects of care including communication and consistently desired education, training, resources and support. There remains inadequate research on care workers and their role within the Australian healthcare context.

Implications for the profession and/ or patient care: Care workers need access to support and resources including professional translators to provide culturally appropriate end-of-life care. Workplaces and registered nurses should facilitate training and provide guidance to care workers. A person-centred approach is required during all client encounters while maintaining appropriate therapeutic relationships including therapeutic use of self and professional boundaries.

McIlveen J, MacPhail C, Fox M, Noonan K.

Background: Global health systems are currently socially and economically burdened. Public health palliative care is an approach to caring toward end of life that can create the innovative change needed to address this inequity. Guided by the Ottawa Charter for Health Promotion (1986), public health palliative care promotes collaboration among palliative care services, civic institutions, and communities to build capacity in all aspects of death, dying, caregiving, and bereavement. Despite growing evidence for the public health approach to palliative care, little is known about how acute hospitals and communities can work together to provide care toward end of life.

Aim: To explore how acute hospitals and communities work together to provide care toward end of life.

Design: Scoping review guided by Arskey and O'Malley framework.

Data Sources: Scopus, Pubmed, CINAHL, and Informit as well as gray literature were searched. Citations were independently assessed against inclusion and exclusion criteria.

Results: Of the six included studies and reports, a priori themes of creating supportive environments; strengthening community action; reorienting health services; developing personal skills and building healthy public policy from the Charter were well represented. Additional themes of communication and language, culture and risk were also identified. Educational, arts health, community engagement initiatives were explored as well as clinical tools, psychosocial interventions, and the No One Dies Alone (NODA) program.

Conclusions: This review offers policymakers, hospitals, and practitioners a framework for implementing hospital-community partnerships toward end-of-life. Despite challenges in acute settings, these initiatives can enhance end-of-life experiences for patients and families.

Patterson P, McDonald FEJ, Tindle R, Bibby K.

Objective: A preliminary examination of the psychosocial wellbeing of young people impacted by a family member's cancer, and changes after engaging with a community cancer support organization.

Methods: Five-hundred-and-sixty young people attending a community cancer support organization self-reported distress and unmet needs at baseline and 6-month follow-up. This included young people who: had a brother or sister living with cancer ("siblings"); had a parent living with cancer ("offspring"); had lost a brother or sister to cancer ("bereaved siblings"); or had lost a parent to cancer ("bereaved offspring").

Results: Between 36.1% (siblings) and 57.6% (bereaved offspring) reported high distress; 61.6% (siblings) to 88.1% (bereaved offspring) endorsed 10+ needs. Distress decreased significantly for offspring and bereaved offspring, and unmet needs decreased significantly for siblings, offspring and bereaved offspring. Between 50.0% (siblings) and 63.6% (bereaved siblings) showed significant improvement in distress, unmet needs, or both.

Conclusions: Many young people impacted by family cancer have elevated distress and unmet needs. Engagement with a community cancer support organization may improve their psychosocial wellbeing.

Van Dinther K, Noonan K, Leonard R, Javanparast S.

Abstract: Unpaid carers of palliative patients make a significant contribution to the health economy but are particularly vulnerable to burdens due to facing the prospect of death. Caring for a loved one at the end-of-life requires knowledge of the death system in which they operate to access both practical support networks and services and emotional support for themselves. We combined qualitative data from interviews and focus groups with survey data designed using the Death Literacy Index (DLI) for 18 unpaid carers of palliative patients in South Australia. Comparing the DLI with the lived experience of carers revealed factors affecting the manner in which carers talk, learn and share knowledge about death and dying. A compassionate communities' model is proposed to capitalise on the strengths and rectify the deficits which pose barriers to unpaid carers networks of support.