Latest Australian research

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.

O'Connor T, Liu WM, Samara J, Lewis J, Strickland K, Paterson C.

Background: Clinicians are frequently asked 'how long' questions at end-of-life by patients and those important to them, yet predicting timeframes to death remains uncertain, even in the last weeks and days of life. Patients and families wish to know so they can ask questions, plan, make decisions, have time to visit and say their goodbyes, and have holistic care needs met. Consequently, this necessitates a more accurate assessment of empirical data to better inform prognostication and reduce uncertainty around time until death. The aims of this study were to determine the timeframes for palliative care patients (a) between becoming comatose and death, and (b) between being totally dependent and bedfast, and then comatose, or death, using Australia-modified Karnofsky Performance Status (AKPS) scores. The secondary aim was to determine if covariates predicted timeframes.

Method: This is a large retrospective cohort study of 2,438 patients, 18 years and over, cared for as hospice inpatients or by community palliative care services, died between January 2017 and December 2021, and who collectively had 49,842 AKPS data points. An Interval-Censored Cox Proportional Hazards regression model was used.

Results: Over 53% (n = 1,306) were comatose (AKPS 10) for longer than one day before death (mean = 2 days, median = 1, SD = 2.0). On average, patients were found to be totally dependent and bedfast (AKPS 20) for 24 days, before progressing to being comatose. A difference in life expectancy was observed at AKPS 20 among people with cancer (mean = 14.4, median = 2, SD = 38.8) and those who did not have cancer (mean = 53.3, median = 5, SD = 157.1).

Conclusion: Results provide clinicians with validated data to guide communication when answering 'how long' questions at end-of-life. Knowledge of projected time to death can prompt timely conversations while the patient can understand and engage in meaningful conversations. The importance of considering covariates such as location and diagnosis in determining timeframes has been highlighted. Shared decision-making and essential person-centered end-of-life care can be planned.

Yuen EYN, Toke S, Macpherson H, Wilson C.

Background/ aims: Social connectedness is increasingly recognised as influencing health outcomes in cancer caregivers; however, there is little understanding of factors which foster feelings of social connectedness among caregivers when providing care. We sought to examine from the caregivers' perspective, factors which contribute to perceived social connection when providing care to someone with cancer.

Method: Semi-structured interviews were conducted with 20 caregivers of people with cancer. Participants were recruited through social media and were eligible if they were aged 18 + years and had provided care to someone with cancer in the preceding 3 years. Data were analysed thematically using NVivo.

Results: Following thematic analysis of interview data, six overarching themes emerged detailing caregivers' experiences with social support, networks, and connectedness. Themes included: people in caregivers' social networks and communication frequency, supportive communication with people in social networks, challenges with talking with others and seeking support, receiving instrumental support from social networks, impact of the carer role on friendships and community activities, and factors which fostered perceived connectedness.

Conclusion: For caregivers of people with cancer, our qualitative findings suggest the importance of receiving emotional and instrumental support from social networks to cope with, and alleviate the stress and strain of providing care. Development and empirical testing of strategies and interventions that improve social support seeking and subsequently perceived connectedness among caregivers are recommended to improve health and wellbeing.