Living and dying in the shadow of coal: Relocating social death and its contestations in Lephalale

\ua9 The Author(s) 2023. Marapong, “place of bones”, is situated in the shadow of the coal-fired Matimba Power Station and Grootegeluk coal mine in Lephalale, northern South Africa. Marapong was named after the bones of a local woman, Salaminah Moloantoa, which were found during the development of Grootegeluk in 1973. That same year her bones were buried on Naawontkomen farm where she had lived. Thirty-four years later with the construction of coal-fired Medupi Power Station, Moloantoa’s bones became the site of industrial construction again in this current iteration of extractivism. Working from two provocations that emerged during fieldwork – we are dead here and the mines turn our lives upside down – I relocate social death and its relation to different kinds of violence that constitute racial capitalism in this city of coal. In so doing, I engage with literature on Afropessimism, the black radical tradition, and land and ancestral struggles and argue for reconceptualising social death as grounded in place and time rather than a totalising ontological condition. Such a rereading emphasises relationality and the processes of contestation over land, life, and death, that open up futures beyond that of bones becoming coal for fossil fuel development

Role of palliative care in survivorship

There is consensus that survivorship care should be integrated, risk or needs stratified, individualised, coordinated and multidisciplinary. But further research is needed to determine the service models that can best deliver optimal outcomes in the most cost-effective way. Model heterogeneity and diversity is needed to address issues that are disease, treatment or symptom specific, and account for other modifying influences such as comorbid illness and lifestyle. Further work is needed to determine the key elements within models of care configured to support cancer survivors that positively influence outcomes, and how these elements can be best delivered across a diverse range of care settings. In the meantime, adopting a needs based approach to care at the individual patient level will ensure that those in most need have access to relevant support and care from specialist palliative care services. Fortunately, current Australian health reforms provide a climate of plasticity and innovation that is conducive to the paradigm shifts required

Advance care planning in 21st century Australia: a systematic review and appraisal of online advance care directive templates against national framework criteria

Objectives A drive to promote advance care planning at a population level has led to a proliferation of online advance care directive (ACD) templates but little information to guide consumer choice. The current study aimed to appraise the quality of online ACD templates promoted for use in Australia. Methods A systematic review of online Australian ACD templates was conducted in February 2014. ACD templates were identified via Google searches, and quality was independently appraised by two reviewers against criteria from the 2011 report A National Framework for Advance Care Directives. Bias either towards or against future medical treatment was assessed using criteria designed to limit subjectivity. Results Fourteen online ACD templates were included, all of which were available only in English. Templates developed by Southern Cross University best met the framework criteria. One ACD template was found to be biased against medical treatment – the Dying with Dignity Victoria Advance Healthcare Directive. Conclusions More research is needed to understand how online resources can optimally elicit and record consumers’ individual preferences for future care. Future iterations of the framework should address online availability and provide a simple rating system to inform choice and drive quality improvement

Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important

© The Author(s) 2015. Background: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. Aim and design: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Data sources: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. Conclusion: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals

Barriers and facilitators to implementation of cancer treatment and palliative care strategies in low- and middle-income countries: systematic review

© 2018, Swiss School of Public Health (SSPH+). Objectives: To appraise improvement strategies adopted by low- and middle-income countries to increase access to cancer treatments and palliative care; and identify the facilitators and barriers to implementation. Methods: A systematic review was conducted and reported in accordance with PRISMA statement. MEDLINE, CINAHL, and the Cochrane Library databases were searched. Bias was assessed using the Standards for Quality Improvement Reporting Excellence, and evidence graded using the Australian National Health and Medical Research Council system. Results: Of 3069 articles identified, 18 studied were included. These studies involved less than a tenth (n = 12, 8.6%) of all low- and middle-income countries. Most were case reports (58%), and the majority focused on palliative care (n = 11, 61%). Facilitators included: stakeholder engagement, financial support, supportive learning environment, and community networks. Barriers included: lack of human resources, financial constraints, and limited infrastructure. Conclusions: There is limited evidence on sustainable strategies for increasing access to cancer treatments and palliative care in low- and middle-income countries. Future strategies should be externally evaluated and be tailored to address service delivery; workforce; information; medical products, vaccines, and technologies; financing; and leadership and governance

Strengthening palliative care in the hospital setting: a codesign study.

OBJECTIVE:To identify actions required to strengthen the delivery of person and family centred hospital-based palliative care so that it addressed the domains of care identified as important for inpatients with palliative care needs and their families. METHODS:A codesign study involving a workshop with palliative care and acute hospital policy, consumer and clinical representatives in Australia. A modified nominal group process generated a series of actions, which were thematically analysed and refined, before being circulated to participants to gain consensus. RESULTS:More than half (n=30, 58%) of the invited representatives (n=52) participated in the codesign process. Nine actions were identified as required to strengthen inpatient palliative care provision being: (a) evidence-informed practice and national benchmarking; (b) funding reforms; (c) securing executive level support; (d) mandatory clinical and ancillary education; (e) fostering greater community awareness; (f) policy reviews of care of the dying; (g) better integration of advance care planning; (h) strengthen nursing leadership; and (i) develop communities of practice for improving palliative care. CONCLUSIONS:Changes to policy, practice, education and further research are required to optimise palliative care within hospital settings, in accordance with the domains inpatients with palliative care needs and their families consider to be important. Achieving these changes will require a whole of sector approach and significant national and jurisdictional leadership

"Stretched thin with little children” – smoking perceptions and experiences of families seeking help with parenting

Cigarette smoking is the leading preventable cause of poor pregnancy outcomes. Pregnancy is a trigger for smoking cessation yet, up to 50% of parents will relapse in the early years of their child’s life. The smoking-related perceptions and experiences of eleven parents seeking professional help with the care and parenting of babies and toddlers were explored, using semi-structured interviews. Inductive thematic analysis identified three themes: parenting as a change catalyst, smoking as a parenting challenge and smoking as a coping strategy. Becoming a parent is a catalyst to reduce the associated risks and stigma associated with smoking, but maintaining rules and boundaries can be perceived as a further burden for parents who are struggling to care for their infant. When faced with difficulties with parenting, parents may revert to smoking as a coping strategy. Based on these study findings, interventions targeting gender norms may be useful in addressing smoking cessation

National quality indicators and policies from 15 countries leading in adult end-of-life care: A systematic environmental scan

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Background: The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision. Methods: A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the 'quality of care' category of the 2015 Quality of Death Index study; and snowballing from Index experts. Findings: Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%). Interpretations: Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families

Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: A systematic review

Copyright © Cambridge University Press 2017. Objective: The working ages (25-65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.Method: A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.Results: Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.Significance of results: Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs

Interventions to reduce harm from smoking with families in infancy and early childhood: A systematic review

© 2015 by the authors; licensee MDPI, Basel, Switzerland. Exposure to adult smoking can have deleterious effects on children. Interventions that assist families with smoking cessation/reduction and environmental tobacco smoke (ETS) avoidance can improve child health outcomes and reduce the risk of smoking initiation. The purpose of this review was to describe the state of the science of interventions with families to promote smoke-free home environments for infants and young children, including parent smoking reduction and cessation interventions, ETS reduction, and anti-smoking socialisation interventions, using the socio-ecological framework as a guide. A systematic review of peer-reviewed articles identified from journal databases from 2000 to 2014 was undertaken. Of 921 articles identified, 28 were included in the review. Considerable heterogeneity characterised target populations, intervention types, complexity and intensity, precluding meta-analysis. Few studies used socio-ecological approaches, such as family theories or concepts. Studies in early parenthood (child age newborn to one year) tended to focus on parent smoking cessation, where studies of families with children aged 1–5 years were more likely to target household SHSe reduction. Results suggest that interventions for reduction in ETS may be more successful than for smoking cessation and relapse prevention in families of children aged less than 5 years. There is a need for a range of interventions to support families in creating a smoke free home environment that are both tailored and targeted to specific populations. Interventions that target the social and psychodynamics of the family should be considered further, particularly in reaching vulnerable populations. Consideration is also required for approaches to interventions that may further stigmatise families containing smokers. Further research is required to identify successful elements of interventions and the contexts in which they are most effective