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.
Chen J, Shaw JM, Dhillon HM, Halkett GKB, McDougall E, Nowak AK, et al.
Purpose: Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C).
Methods: Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be "missed" by the screening items.
Results: Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2.
Conclusions: We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.
Collier A, Chapman M, Hosie A.
Abstract: Benzodiazepines are a class of drug extensively used in palliative care. Their use has predominantly been studied within a biomedical framework. Our study instead focused on the sociocultural aspects of benzodiazepine practices. We aimed to explore clinicians, patients and family members' values, beliefs, knowledge and feelings regarding use of benzodiazepines, including in-situ clinical decision-making processes, affects and actions. Social theory understandings of affect, the body and of suffering provided the theoretical lens through which data were analysed. Analysis generated the following themes: (1) A special specialty; (2) The suffering body and the moral imperative to 'settle; (3) The liminal body - living and dying; and (4) Organizational realities. Use of benzodiazepines were largely governed by social and moral norms, cultural expectations and organizational realities as part of affective assemblages of care.
Disler APR, Madhuvu DA, Ly L, Pascoe DA, Hickson DH, Wright PJ, et al.
Background: The COVID-19 pandemic added to demand and diversification in specialist palliative care, including unprecedented need to deliver supportive respiratory therapies.
Aim: To understand training needs and ongoing models of care, including delivery of chronic disease management and supportive respiratory therapies, post-pandemic for palliative care clinicians.
Methods: Mixed-methods study of specialist palliative care physicians and nurses, recruited through Australian palliative care organisations and snowballing sampling between Nov 2022 - March 2023. Online survey captured training required and acquired in chronic disease management, respiratory therapies, and ongoing barriers to quality care delivery. Structured follow-up interviews explored adjustments in models of care and key areas of need. Quantitative data were described, free-text and interview data analysed through content and thematic analyses respectively.
Results: Of 71 palliative care responding clinicians (47 physicians, 23 nurses), most were female (79%) and many were rurally-based (38%). Completion of any chronic disease-specific training was infrequent (21% physicians, 30% nurses), compared with informal organ-specific training (61-83%) and age-related decline training (44-60%) through generalised palliative care qualifications. Respondents commonly managed chronic breathlessness (55%) and respiratory therapies (24-42%), yet targeted training was atypical. Content analysis (n=64) confirmed ongoing training gaps broadly in coping with daily operational demands and workforce fluctuations and specifically in respiratory skills. Interviews (n=7) reported challenges in care delivery post-pandemic; absence of pathways and policies for chronic disease management; and patient misconceptions about palliative care.
Conclusions: Clinicians are frequently required to support varied chronic conditions, including the use of respiratory therapies and breathlessness management, but report lack of specific training. Future endeavours should address workforce training and models of care to support increased demand.
Freak-Poli R, Htun HL, Teshale AB, Kung C.
Background: Widowhood negatively affects trajectories of social isolation and loneliness. Given the inevitability of spousal bereavement for many, further investigation into potential modifiers of bereavement-related loneliness is warranted.
Aim: To examine the moderating effects of social isolation, social support, sociodemographic, self-efficacy, health, and quality of life factors on changes in loneliness before and after widowhood.
Methods: We analysed 19 waves of data from the Household, Income and Labour Dynamics in Australia (HILDA) Survey, comprising 749 widowed and 8,418 married individuals (comparison). Coarsened exact matching weights were applied, controlling for age and time trends. Local polynomial smoothed plots illustrated social health trajectories from three years before to three years after spousal death. All analyses were gender-stratified.
Results: Low social isolation and higher social support did not prevent increased loneliness following widowhood. Men in major cities were less likely to experience reductions in social isolation during bereavement, despite being less socially-isolated at baseline than men in regional/remote areas. The bereavement-loneliness relationship was consistent across all subgroups. For men, this relationship was weakened by older age and being born in a non-English-speaking country, but strengthened by poverty and living in a regional/remote areas. For women, it was weakened by older age, and strengthened by factors such as being born in a non-English-speaking country, poverty, employment or volunteering, and having a long-term mental health condition.
Conclusions: Loneliness is a common and potentially unavoidable experience during widowhood, highlighting the importance of screening by healthcare workers to improve wellbeing and prevent future mental health issues.
Maslen S.
Abstract: People living with life-limiting illnesses often talk about their ideal experience of 'care' as one where the care itself is hidden. Situated in the sociological literature on places and materialities of palliative care, in this paper I examine the hiding of care in a small, non-clinical respite house in an Australian city. Care is hidden by the at-homeness that staff, guests and volunteers alike all do. Working with Oldenburg's notion of 'third places,' I show how in this illness context the separation between home, work and other places in the community can blur, with respite services 'standing in' for the family home, or acting as a 'homely' extension of the hospital. Such places meet diverse needs beyond pure sociability as in Oldenburg's original conceptualisation.
Last updated 30 April 2024