Caroline Phelan

Objectives: To explore parents’ experiences of palliative care in the neonatal intensive care unit (NICU) to inform and improve the delivery of family-centred palliative care. Methods: This exploratory prospective qualitative study employed a pragmatic approach. Parents of an infant who had died in the NICU at the Women’s and Children’s Hospital, Adelaide, and were bereaved for 6–12 months participated in semi-structured interviews. Interviews via videoconferencing or telephone call were audio-recorded and transcribed. Inductive thematic analysis was conducted to generate themes. Results: Six parents (four mothers and two fathers) participated in five interviews. Four themes characterised parents’ experiences: continual balance of hope and fragility, assuming responsibility for decision-making, forming deep connection and being together but also separate. Parents maintained hope when faced with uncertainty and infant fragility. Involvement in decision-making was important regardless of the scope of options. Opportunities for deep infant connection and sharing the infant with family were highly valued. Conclusions: Novel findings include parents holding unwavering hope and placing higher importance on both decision-making and forming deep infant connection over providing infant care. These findings can be implemented in neonatal care through clinician communication, hospital procedures and appropriate physical spaces within the NICU. Further similar research is needed to explore a greater range of parent experiences.

Background: Patients and families from culturally and linguistically diverse (CALD) backgrounds face distinct challenges during end-of-life care (EOLC) in intensive care unit (ICU) settings, where communication, cultural expectations and decision-making may conflict with clinical norms. These complexities have important implications for intensive and palliative care teams. Objectives: To map literature on clinician, patient and family perspectives on end-of-life communication with CALD populations in ICUs, and identify barriers and facilitators to culturally responsive care. Design: This scoping review followed Joanna Briggs Institute methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The protocol was registered with the Open Science Framework and published in BMJ Open. Screening, review and data extraction were conducted by multiple reviewers using Covidence and the Joanna Briggs Institute tool, with findings synthesised through inductive thematic analysis. Primary and secondary outcome measures: The primary outcome was to identify barriers and facilitators to communication between clinicians, patients and families from CALD backgrounds during EOLC. Secondary outcomes were to map the scope of evidence, describe study characteristics and participant demographics, and summarise themes on cultural sensitivity, clinician awareness, family involvement, decision-making and integration of support services. Results: Thirty of 766 screened studies were included. Three themes emerged: communication challenges; cultural sensitivity and humility and decision-making and support. Barriers included limited access to palliative care, language discordance, underuse of interpreters, clinician discomfort and conflicting care expectations. Facilitators included structured meetings, inclusive practices and interdisciplinary collaboration. Conclusions: Structural, communicative and cultural barriers undermine equitable EOLC for CALD patients. Embedding palliative care principles, cultural responsiveness and shared decision-making into ICU practice requires coordinated input from a multidisciplinary team involving physicians, nurses, social workers, spiritual care, psychologists and interpreters. System-level reforms in training, service delivery and research are needed to ensure person-centred care. Protocol registration: Registered with BMJ Open DOI: 10.1136/bmjopen-2024-090168

Objective: Queensland implemented a centralised voluntary assisted dying (VAD) pharmacy model to promote safety, consistency and equitable access to VAD substances. In a geographically dispersed state, such as Queensland, a potential concern is whether centralisation affects time-to-delivery (TTD) for patients in regional and rural areas. This audit examined whether differences exist in TTD between South East Queensland (SEQ; metropolitan) and non-SEQ (non-metropolitan) patients, and explored reasons for prescription and visit cancellations to determine whether geographic factors, particularly remoteness, influenced service reliability. Methods: All VAD substance deliveries between 1 January 2023 and 31 January 2024 were analysed. TTD was defined as the difference between the patient’s preferred and actual supply dates. Comparisons were made across region (SEQ vs non-SEQ), hospital and health service districts, and Modified Monash Model categories. Reasons for prescription and visit cancellations were also explored, as these cases were not captured in the TTD dataset if a delivery did not proceed, and may reveal potential geographic barriers for timely access. Results: Of 911 patients, 723 (83%) received the VAD substance on their preferred date. No statistically significant differences in TTD were observed across region, hospital and health service districts or Modified Monash Model classifications, demonstrating consistent and reliable statewide delivery – an indicator of safety and standardised practice. Cancellations (prescriptions n = 58, visits n = 56) were geographically uniform and most commonly due to patient death. Conclusions: Queensland’s centralised VAD pharmacy enables equity of access and safe delivery of VAD substances regardless of geography, supporting standardised practice and mitigating operational risks through centralised oversight.

Background: Research evidence is fundamental to informing clinical decision-making and advancing palliative care practice. Although academic, peer-reviewed journals underpin evidence-based healthcare, they represent only part of the knowledge landscape. Incorporating grey literature from sources outside traditional academic publishing can: provide context, balance and diverse perspectives; address knowledge gaps; and mitigate publication bias. However, its decentralised and dispersed nature can pose challenges for researchers unfamiliar with its scope and diversity. Aim: To present a flexible framework comprising 12 elements to support researchers in systematically identifying and locating grey literature relevant to palliative care across a broad range of sources. The framework accommodates variation in research focus, available resources, and context. Practical guidance is also provided for reporting grey literature searches with the transparency required in systematic reviews. Methods: The framework was developed through expert consensus, informed by the authors’ collective experience in systematic review methodology, grey literature searching, and information retrieval. It has been iteratively refined through teaching and real-world review projects. Each included source was assessed for its depth and breadth of palliative care content. Results: The 12-element framework supports palliative care researchers in planning and executing searches across a wide range of fit-for-purpose sources. Practical examples are provided alongside a classification of grey literature source types. Discussion and conclusion: This framework offers structured yet adaptable guidance to support more consistent grey literature engagement. Persistent challenges include defining search boundaries, managing duplication, record-keeping, and assessing quality. Future research should explore the framework’s utility across diverse review types and palliative care research priorities.

PURPOSE: This study explores the views of health care providers (HCPs), regulators, patients with cancer, and caregivers in Vietnam on the barriers to safe access to opioids for cancer pain relief and suggested solutions. MATERIALS AND METHODS: We conducted a qualitative, descriptive study using semistructured interviews. Five HCPs, six patients with cancer/caregivers, and six regulators (n = 17) were purposefully sampled across Vietnam. Audio recordings were transcribed verbatim and subjected to inductive content analysis using a Framework method. RESULTS: Five categories of barriers were identified: (1) Patient-related barriers (fear of addiction and other side effects, morphine's association with impending death); (2) professional-related barriers (knowledge and experience deficit, fear of addiction and other side effects, and concerns about diversion and liabilities); (3) medicine-related barriers (limited oral morphine availability, limited manufacturers and suppliers, and difficulties accessing parenteral opioids); (4) regulatory barriers (difficulties obtaining certifications of continued need for opioid use, overly strict regulation enforcement, lack of information on opioid distribution channels); and (5) services delivery barriers (scarce palliative and home care services). Potential solutions include strengthening education for patients, communities, and health care professionals; mandating oral morphine availability at district levels; diversifying opioid variety and enhancing domestic manufacturing; establishing an electronic prescription monitoring system; expanding palliative care training and implementation across all health care system levels; and using telemedicine. CONCLUSION: Barriers to opioid access for cancer pain control in Vietnam are multifactorial and interrelated, necessitating interdisciplinary solutions.

Objective Protocol to explore what is known about communication between critical care providers and patients and families from culturally and linguistically diverse backgrounds (defined as people who are either from minority ethnic groups, non-English-speaking backgrounds who may have diverse cultural, linguistic, spiritual and religious affiliations and opinions) about death, dying, end-of-life care and organ donation in the intensive care unit (ICU). Introduction Patients from culturally and linguistically diverse backgrounds experience barriers to optimised care when admitted to the ICU. These barriers appear to derive from differences in language, cultural, societal and ethical expectations between patients, their families and healthcare professionals. These barriers may significantly impact the delivery of end-of-life care to patients from culturally and linguistically diverse backgrounds. Therefore, this has the potential for inadequate management of medical, psychological and existential distress. Inclusion criteria Studies of all designs reporting for adult (age ≥18 years) patients and family members from culturally and linguistically diverse backgrounds at end-of-life in the ICU setting will be included. Studies that report results for patients aged Methods Relevant sources will be retrieved, and their citation details will be imported into the Joanna Briggs Institute (JBI) System for the Unified Management, Assessment and Review of Information. This scoping review was guided by the JBI methodology for scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A systematic search was conducted in EBSCOhost, Web of Science, PubMed Central and SciELO, OVID Medline, CINAHL, and Scopus, limited to English-language publications, without date limitation. Key study characteristics and findings will be extracted using a data extraction tool developed by the reviewers. Anticipating heterogeneous study designs, findings will be presented as a thematic synthesis. Ethics and dissemination This is a protocol for a scoping review, formal ethics approval from the Human Research Ethics Committee (HREC) of the Local Health Network will be obtained for research projects that could potentially stem from this review and will then be subsequently disseminated through proper channels.

PURPOSE: There is limited information on preferences for place of care and death among patients with cancer in low- and middle-income countries (LMICs). The aim was to report the prevalence and determinants of preferences for end-of-life place of care and death among patients with cancer in LMICs and identify concordance between the preferred and actual place of death. METHODS: Systematic review and meta-analysis guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses was conducted. Four electronic databases were searched to identify studies of any design that reported on the preferred and actual place of care and death of patients with cancer in LMICs. A random-effects meta-analysis estimated pooled prevalences, with 95% CI, with subgroup analyses for region and risk of bias. RESULTS: Thirteen studies were included. Of 3,837 patients with cancer, 62% (95% CI, 49 to 75) preferred to die at home; however, the prevalence of actual home death was 37% (95% CI, 13 to 60). Subgroup analyses found that preferences for home as place of death varied from 55% (95% CI, 41 to 69) for Asia to 64% (95% CI, 57 to 71) for South America and 72% (95% CI, 48 to 97) for Africa. The concordance between the preferred and actual place of death was 48% (95% CI, 41 to 55) for South Africa and 92% (95% CI, 88 to 95) for Malaysia. Factors associated with an increased likelihood of preferred home death included performance status and patients with breast cancer. CONCLUSION: There is very little literature from LMICs on the preferences for end-of-life place of care and death among patients with cancer. Rigorous research is needed to help understand how preferences of patients with cancer change during their journey through cancer.

PURPOSE: We aimed to assess knowledge, attitudes, and perceived barriers among health care professionals (HCPs), policymakers, and regulators in Vietnam related to opioid therapy for cancer pain. METHODS: We conducted a cross-sectional study in Vietnam from June to August 2022. Participants completed a questionnaire on their demographic characteristics, knowledge and attitudes toward opioid therapy, and barriers to accessing opioids for cancer pain. RESULTS: Two hundred seven HCPs and 15 policymakers/regulators completed the questionnaire. Poor knowledge about opioids in cancer pain was found in 63.3% of HCPs and 80.0% of policymakers/regulators. Poor knowledge was associated with a lack of training in cancer pain management or palliative care (PC; prevalence ratio [PR], 1.14 [95% CI, 1.04 to 1.24]). Negative attitudes toward opioid therapy in cancer pain were held by 64.7% of HCPs and 80.0% of policymakers/regulators. Negative attitudes were associated with the unavailability of oral morphine in the workplace (PR, 1.10 [95% CI, 1.01 to 1.20]). The most common major barriers reported were the absence of national policy on pain management and PC (34.7%), inadequate training in opioid use for cancer pain (33.8%), lockdown of health facilities during the COVID-19 pandemic (32.4%), limited opioid availability in local health facilities (32.4%), and excessively restrictive regulation of opioid dispensing in pharmacies (32.4%). CONCLUSION: This study found a knowledge deficit and negative attitudes toward opioid therapy for cancer pain among HCPs and policymakers/regulators. Improving education and training in opioid therapy is essential. Recognizing major barriers can guide strategies to enhance safe opioid accessibility for cancer pain management in Vietnam.