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.
Ruf H, Ireland CJ, Pelentsov LJ, Kopecki Z.
Background: Inherited epidermolysis bullosa (EB) is a rare, incurable genodermatosis characterised with recurrent skin blistering and mucosal fragility. Wound care and nursing are critical to everyday lives of children living with EB, while the profound effect of caring for a child with a painful genetic condition leaves a significant effect on quality of life of parents and the family. This study aimed to better understand the lived experiences and supportive care needs of parents of children with EB in Australia.
Methods: Interpretative phenomenological analysis was used, and semi structured focus groups interviews were conducted with Australian parents of children with EB. This included 18 parents of children with EB simplex (EBS), 9 parents of children with Junctional EB (JEB) and 16 parents of children with Dystrophic EB (DEB). The data were thematically analysed, all participants are residents of Australia and therefore reflect the services in this geographical location.
Results: Six overarching themes included: practical needs, emotional needs, informational needs, psychological needs, social needs and physical needs.
Conclusions: Parents caring for a child with EB in Australia face numerous needs and challenges regardless of EB severity which highlights the need for provision of better more comprehensive services to deliver family focused holistic EB care that can alleviate some of the burden of EB and improve the quality of life for families and individuals living with EB.
Shimoniaba K, Crawford K, Lee DA, Qiu Y, Lalor AF, Jackson KM, et al.
Aims: To examine residential aged care staff's experience of death and grief, and their support needs.
Methods: A mixed-methods sequential explanatory design, using an online cross-sectional survey that included the Texas Revised Inventory of Grief and the Grief Support in Health Care Scale. Followed by semi-structured interviews with direct care workers and managers working in residential aged care homes were conducted.
Results: Over 60% of participants experienced five or more resident deaths in the previous 12 months. Although, different levels of grief were experienced among different roles, the importance of open communication and opportunities for farewells after resident death was highlighted. Participants suggested support and education to normalise grief and promote self-care.
Conclusion: Recognising staff grief following the resident death is important. Providing support and education may help improve staff wellbeing and contribute to the delivery of high-quality care for both residents and their families.
Smith TA, Roberts MM, Luckett T, Cho JG, Klimkeit E, Stephenson H, et al.
Background: Chronic obstructive pulmonary disease (COPD) is an often-progressive respiratory disease associated with disabling breathlessness. Breathlessness intervention services (BIS), which coach patients to self-manage breathlessness using non-pharmacological strategies, are effective in a variety of populations, including those with cancer and serious respiratory disease. This study aimed to compare the impact of the Westmead Breathlessness Service in people with moderate to severe COPD.
Methods: We analysed 113 participants randomised (1:1) with moderate/severe COPD (forced expiratory volume in 1 s (FEV1)/forced vital capacity <0.70 and FEV1 ≤60% predicted) and disabling breathlessness (modified Medical Research Council (mMRC) Breathlessness Score ≥2) to either an 8-week intervention involving breathing techniques, handheld fan use, exercise, energy conservation, dietetic advice (n=54) or 8-week wait-list control group (n=59). The primary outcome was change in Chronic Respiratory Questionnaire (CRQ) Mastery of breathlessness subscale. Secondary outcomes included change in other CRQ subscales (Fatigue, Emotion and Dyspnoea), exertional breathlessness intensity/unpleasantness (0-10 Numerical Rating Scale Score), anxiety and depression. Difference in change over 8 weeks between groups was compared using ANCOVA; p<0.05 statistically significant.
Findings: Participants were aged 70.9 (±8.5) years, 50% female, mean FEV1 =0.8 L (±0.3 L; 34% predicted), mMRC Breathlessness Score 3 (IQR 3-4). CRQ-Mastery improved following intervention compared with control (between-group difference 0.5 units; 95% CI 0.2 to 0.8; p=0.0262) using modified intention-to-treat analysis. Better CRQ-Dyspnoea and CRQ-Fatigue were seen in the intervention group (between-group difference-CRQ-Dyspnoea 0.4 units; CI 0.1 to 0.7; p=0.005, and CRQ-Fatigue 0.4 units; CI 0.1 to 0.7; p=0.014). Exertional breathlessness intensity (difference -0.8 units; CI -1.4 to -0.2; p=0.013) and breathlessness unpleasantness (difference -1.2 units; CI -1.7 to -0.6; p=0.001) also improved.
Intepretation: An 8-week BIS improved CRQ-Mastery, Dyspnoea and Fatigue, exertional breathlessness intensity and unpleasantness in people with severe COPD.
Sundararajan K, Subramaniam A, Hanson-Easey S, Thompson C, Phelan C, Doherty S, et al.
Introduction: Cultural diversity is a broad term used to encompass ethnic and racial diversity, multiculturalism, diverse languages, religions, practices, beliefs and identities of people. In ICU, people who are culturally diverse are at increased risk of marginalisation, sub-optimal care, higher morbidity and mortality. Ethnocultural biases and stereotypical assumptions can negatively influence ICU care.
Aim: To explore the experiences of nurses, physicians and allied health professionals (clinicians) in caring for patients and their family members from culturally diverse backgrounds.
Methods: Ethical approval was granted for an exploratory descriptive study. Convenience sampling was used to recruit clinicians involved in patient care, from two ICUs in Australia. Semi-structured individual interviews were undertaken to gather data, with interviews audio recorded and auto-transcribed. Data were analysed using inductive content analysis.
Findings: Twenty clinicians participated, with interviews lasting 26 min (mean). Analysis revealed four main themes: (i) Cultural sensitivity and responsiveness, which describes the importance of cultural sensitivity and responsiveness in care; (ii) Complexities of communication, which includes descriptions of strategies to overcome communication barriers; (iii) At the end of life, which describes end-of-life care challenges, particularly in the context of brain death and organ donation; and (iv) The way forward, offering suggestions for optimising care for patients and family members who were culturally diverse.
Conclusions: Cultural diversity complicates patient and family care and communication in the ICU. These findings emphasise the importance of clinicians' sensitivity and openness to difference, and that it is clinicians' responsibility to overcome cultural and linguistic differences, not the critically ill patient or their family.
Vandersman P, Chakraborty A, Rowley G, Tieman J.
Background: Residential aged care is increasingly becoming the final place of care for many older adults in high-income countries. For many families, grief begins well before the death of their loved one, emerging as early as the time of entry into residential care. This grief often continues as they witness ongoing decline and deterioration and extends into bereavement following the resident's death. While caregiver grief is well recognised, there is limited understanding of how these experiences unfold across this full journey and the specific challenges families face at each stage. This study explored the grief, loss and bereavement needs of family caregivers of people who are about to enter, living in, or have died in a residential aged care facility.
Methods: This qualitative study used semi-structured interviews and focus groups with family caregivers and residential aged care staff. Data were managed using NVivo and analysed using reflexive thematic analysis approach.
Findings: Thirty eight participants (n = 28 staff members; and n = 10 family caregivers) from nine residential aged care services participated in the study. Five themes developed from the data: (i) grief manifests early and is associated with the loss of caregiver role; (ii) grief and emotional strain arise in transition, creating support needs; (iii) timely communication and tailored care shapes grief experience at end-of-life; (iv) inclusive after-death rituals support meaningful closure; and (v) relational support and community sustain families in grief. Participants highlighted the complexity of grief and loss experienced by family caregivers throughout their loved one's journey in residential aged care, from admission to death.
Conclusions: Establishing culturally sensitive, timely, and open conversations about death and dying while fostering strong and supportive relationships between staff, caregivers, and residents is crucial in helping family caregivers navigate their grief, loss, and bereavement.
Last updated 30 April 2024