The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.
Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.
Whiteford G, Curley D, Mooney G, Kinsman L, Lower T, Hobbs M.
Objectives: Despite practice development in the area of advanced care planning (ACP) and systems wide changes implemented to support ACP processes, there has been a paucity of research which has addressed the experiences of a key stakeholder group - family and carers - as they navigate their way through these often very challenging processes. The study described in this article focussed on this key group.
Methods: In-depth qualitative interviews were undertaken with family members and carers in a regional area of Australia in order to illuminate their lived experiences of ACP processes.
Results: Thematic analysis of the narrative data yielded 4 key themes: Being overwhelmed on the ACP journey; unifying effects of completing and using an advanced care directive (ACD); experiencing the highlights and lowlights of care; and paying it forward in advice to staff, carers and families.
Significance of results: The ACP journey is unique for each carer/family and can be overwhelming. Whilst he lived experiences of families/carers indicated that the quality of care received was of a high standard, feedback to staff suggested their communications be timelier and more empathic. All participants in this study reported benefitting from engaging in ACP early and appreciated support to do so. All benefitted from the preparation of an ACD and found the outcomes (in terms of concordance) gratifying.
Foster K, Mitchell G, Richard E, Steadman KJ, Senior H, Estafanos R, et al.
Background: Xerostomia is a common and difficult symptom experienced by patients with cancer. Pilocarpine is a cholinergic agent that stimulates salivation.
Aim: To assess the feasibility of conducting a N-of-1 trial to determine the efficacy of pilocarpine orally dissolving tablets in patients with xerostomia.
Design: Double-blind, crossover, placebo-controlled N-of-1 trials of 5 mg pilocarpine tablets vs placebo. Each trial consisted of three 6-day cycles containing pilocarpine (3 days) and placebo (3 days) in random order.
Settings/ participants: Participants with advanced cancer and xerostomia (scoring >3 on an 11-point numerical rating scale) from any cause, were recruited from an inpatient and outpatient palliative care unit in Brisbane, Australia.
Results: Eighteen people were recruited in 17 months. Nine withdrew, seven before or during the first 4 days. Three withdrew due to unacceptable side effects. Two participants met the definition of response (⩾2 point reduction in mean scores active vs placebo cycles). When assessing individual cycles, 15 out of 27 cycles (56%) met the definition of response. More people reported at least one mild episode during pilocarpine than placebo of nausea (6 vs 3), vomiting (3 vs 0) and sweating (3 vs 2). About 48% of adverse event classifications were reported in placebo cycles only.
Conclusions: Recruitment to an N-of-1 trial for xerostomia is feasible but attrition was high (50%). Early dropout may have been due to the trial length, complexity, appropriateness or number of questionnaires. Adverse events were generally mild. Two of 10 participants were considered to have benefited from pilocarpine warranting ongoing treatment.
Kirby E, McLaughlan R, Bellemore F, Swanson R, Gissing J, Chye R.
Abstract: Comfort is a central aspect of palliative care, encompassing the management of pain and symptoms, as well as how people feel and experience care. Comfort has been argued to be especially tenuous or transient in palliative care, as a constantly shifting set of bodily sensations and relations are anticipated and cared for. In this article, drawing on in-depth interviews and photo elicitation, we explore the accounts of patients, family carers, staff and volunteers from a palliative care service in Australia, to understand how care is configured and facilitated through everyday gestures of comfort. We unpack how comfort (and comforting) is understood, sought, and done, to reveal how it is experienced as a set of social, relational, processual, and dynamic relations between bodies and environments. Our findings reveal how comfort for those nearing the end of life and those who care for them is brought about variously in the familiarity and reliability of things and surroundings, as well as through gestures of intimacy, recognition, and flexibility. We find that while predominantly considered as intentional and momentary, comfort has lasting effects. These lingering affective resonances, we argue, are key to recognising the diversity of what matters to people in palliative care.
Tognela JA, Rudaizky D, Robinson KT, Mason HM, Breen LJ.
Abstract: Informal social support can both aid coping and be a source of distress following bereavement, prompting calls for investigating the features inherent in interactions between informal social supporter providers and the bereaved. Studies were identified by searching Medline, PsycINFO, CINAHL, ProQuest, and ProQuest (dissertations and theses) to 18th January 2024. A total of 23 papers underwent quality appraisal and data extraction. Intended supportive interactions were significantly associated with perceived supportive interactions in 93% of the 14 quantitative studies. A narrative synthesis identified key components of helpful (e.g., aligning with the needs of the recipient) and unhelpful informal social support (e.g., provider discomfort). These results are incorporated into a proposed Interaction Model of Informal Social Support following Bereavement (IM-ISSB) to integrate the identified factors associated with helpful and unhelpful informal social support. This model presents a novel approach to understanding support interactions following bereavement.
Cowley A, Morphet J, Crawford K.
Aim: To explore the experiences of emergency nurses providing end-of-life care during the COVID-19 pandemic.
Design: A qualitative descriptive study.
Methods: Data were collected between May and August 2023. Individual, semi-structured interviews were conducted face to face or by videoconferencing with a purposive and snowballed sample of 11 emergency nurses. Data were analysed using thematic analysis.
Results: There were four main themes identified: (1) Isolation and loneliness that emergency nurses felt when providing end-of-life care throughout COVID-19. (2) Comparison of Care Relating to Communication; whereby emergency nurses compared the provision of end-of-life care before COVID-19 to end-of-life care provided during the pandemic. (3) Frustration and guilt: emergency nurses felt when providing end-of-life care. (4) Teamwork: participants interviewed explored the meaning of having a supportive team when providing end-of-life care.
Conclusions: This study explores in-depth experiences of emergency nurses providing care to those who were dying during the COVID-19 pandemic. This study identified that emergency nurses were impacted emotionally by providing end-of-life care during the pandemic, and ongoing support is likely to be needed. This study also reinforced the strength of teamwork amongst emergency nurses.
Last updated 30 April 2024