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In Regency England a profligate son was regarded as every parent's worst nightmare: he symbolized the dangerous temptations of a new consumer society and the failure of parents to instil moral, sexual, and financial self-control in their sons. This book tells the dramatic and moving story of one of those 'profligate sons': William Jackson, a charming teenage boy, whose embattled relationship with his father and frustrated attempts to keep up with his wealthy friends, resulted in personal and family tragedy.

Background Lymphoedema is a common, distressing, and debilitating condition affecting more than 200 million people globally. There is a small body of evidence to guide lymphoedema care which underpins several lymphoedema clinical practice guidelines developed for high-income countries (HIC). Some of these recommendations are unlikely to be feasible in low-resource settings. Aim To develop practice points for healthcare workers that optimise lymphoedema care in low- and middle-income countries (LMIC). Methods A nominal group technique (NGT) was undertaken to gain consensus on which content from HIC guidelines was important and feasible to include in practice points for LMIC, and other important advice or recommendations. Participants included experts, clinicians, and volunteers involved in lymphoedema care in LMIC. The NGT followed five key stages: silent ‘ideas’ generation, round-robin rationale, clarification, refinement and verification. The first, fourth and fifth stages were completed via email, and the second and third during a video meeting in order to generate a series of consensus based prevention, assessment, diagnosis, and management of lymphoedema in LMIC practice points. Results Of sixteen participants invited, ten members completed stage 1 of the NGT (ideas generation), of whom six contributed to stages 2 (round-robin) and 3 (clarification). All those who completed stage 1 also completed stages 4 (refinement) and 5 (verification). Practice points unanimously agreed on included Complex Decongestive Therapy (CDT) and good skin care, with management to be determined by lymphoedema stage. For podoconiosis-endemic areas, the use of socks and shoes was identified as very important in the prevention of non-filarial lymphoedema and other lymphoedema-causing conditions. Participants indicated that diagnosing lymphoedema using the lymphoscintigraphy and Indocyanine green (ICG) fluorescent lymphography was not possible due to unavailability and cost in LMIC. Surgical procedures for lymphoedema management were unanimously eliminated due to the unavailability of technology, limited workforce, and expensive cost in LMIC. Conclusion The consensus-based practice points generated by this project provide healthcare workers with guidance on caring for people with lymphoedema in LMIC. Further development of workforce capacity is needed.

Background Little is known about the prevalence and incidence in low and middle-income countries (LMICs) of secondary lymphedema due to cancer. The purpose of the study is to estimate the prevalence and incidence in LMICs of secondary lymphedema related to cancer and/or its treatment(s) and identify risk factors. Method A systematic review and meta-analysis was conducted. Medline, EMBASE and CINAHL were searched in June 2019 for peer-reviewed articles that assessed prevalence and/or incidence of cancer-related lymphedema in LMICs. Risk of bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Prevalence Studies. Estimates of pooled prevalence and incidence estimates were calculated with 95% confidence intervals (CI), with sub-group analyses grouping studies according to: country of origin, study design, risk of bias, setting, treatment, and lymphedema site and measurement. Heterogeneity was measured using X 2 and I 2 , with interpretation guided by the Cochrane Handbook for Systematic Reviews. Results Of 8766 articles, 36 were included. Most reported on arm lymphedema secondary to breast cancer treatment ( n  = 31), with the remainder reporting on leg lymphedema following gynecological cancer treatment ( n  = 5). Arm lymphedema was mostly measured by arm circumference ( n  = 16/31 studies), and leg lymphedema through self-report ( n  = 3/5 studies). Eight studies used more than one lymphedema measurement. Only two studies that measured prevalence of leg lymphedema could be included in a meta-analysis (pooled prevalence =10.0, 95% CI 7.0–13.0, I 2  = 0%). The pooled prevalence of arm lymphedema was 27%, with considerable heterogeneity (95% CI 20.0–34.0, I 2  = 94.69%, n  = 13 studies). The pooled incidence for arm lymphedema was 21%, also with considerable heterogeneity (95% CI 15.0–26.0, I 2  = 95.29%, n  = 11 studies). There was evidence that higher body mass index (> 25) was associated with increased risk of arm lymphedema (OR: 1.98, 95% CI 1.45–2.70, I 2  = 84.0%, P <  0.0001, n  = 4 studies). Conclusion Better understanding the factors that contribute to variability in cancer-related arm lymphedema in LMICs is an important first step to developing targeted interventions to improve quality of life. Standardising measurement of lymphedema globally and better reporting would enable comparison within the context of information about cancer treatments and lymphedema care.

Genetic counselling and testing have utility for people with palliative care needs and their families. However, genetic and palliative care health professionals have described difficulties initiating palliative-genetic discussions. Between March and July 2022, we received n = 73 surveys (6% response rate) from genetic and palliative care health professionals in Australia and New Zealand that assessed and compared barriers and facilitators. The main perceived barrier to both groups was palliative care health professionals’ lack of genetic knowledge (44%). Most palliative care health professionals were ‘not at all confident’ performing several activities, including discussing DNA banking (52%) and knowing their legal responsibilities when sharing genetic information (58%). The most frequently selected facilitator for genetic health professionals was fostering close relationships with palliative care health professionals (52%), while palliative care health professionals indicated a genetic referral template (51%) would be of assistance. Almost all participants agreed genetic discussions do not undermine the central ethos of palliative care (87%). Fewer palliative care health professionals considered themselves well situated to have genetic discussions with a palliative patient’s family compared to genetic health professionals (p = 0.014). Our results suggest that genetic and palliative care health professionals support integrating genetics into palliative care, although refinement of the palliative care health professionals’ role in this process is required. We have identified intervention targets to overcome barriers related to knowledge and confidence, which ought to be integrated into future interventions designed to support health professionals deliver the benefits of genetic information to people with palliative care needs and their families.

Background There are a variety of methods for priority setting in health research but few studies have addressed how to prioritise the gaps that exist between research evidence and clinical practice. This study aimed to build a suite of robust, evidence based techniques and tools for use in implementation science projects. We applied the priority setting methodology in lung cancer care as an example. Methods We reviewed existing techniques and tools for priority setting in health research and the criteria used to prioritise items. An expert interdisciplinary consensus group comprised of health service, cancer and nursing researchers iteratively reviewed and adapted the techniques and tools. We tested these on evidence-practice gaps identified for lung cancer. The tools were pilot tested and finalised. A brief process evaluation was conducted. Results We based our priority setting on the Nominal Group Technique (NGT). The adapted tools included a matrix for individuals to privately rate priority gaps; the same matrix was used for group discussion and reaching consensus. An investment exercise was used to validate allocation of priorities across the gaps. We describe the NGT process, criteria and tool adaptations and process evaluation results. Conclusions The modified NGT process, criteria and tools contribute to building a suite of methods that can be applied in prioritising evidence-practice gaps. These methods could be adapted for other health settings within the broader context of implementation science projects.

About 70% of patients with advanced cancer experience pain. Few studies have investigated the use of healthcare in this population and the relationship between pain intensity and costs. Adults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology/palliative care outpatient services to the Stop Cancer PAIN trial (08/15-06/19). Out-of-hospital, publicly funded services, prescriptions and costs were estimated for the three months before pain screening. Descriptive statistics summarize the clinico-demographic variables, health services and costs, treatments and pain scores. Relationships with costs were explored using Spearman correlations, Mann-Whitney U and Kruskal-Wallis tests, and a gamma log-link generalized linear model. Overall, 212 participants had median worst pain scores of five (inter-quartile range 4). The most frequently prescribed medications were opioids (60.1%) and peptic ulcer/gastro-oesophageal reflux disease (GORD) drugs (51.6%). The total average healthcare cost in the three months before the census date was A$6,742 (95% CI $5,637, $7,847), approximately $27,000 annually. Men had higher mean healthcare costs than women, adjusting for age, cancer type and pain levels (men $7,872, women $4,493, p<0.01) and higher expenditure on prescriptions (men $5,559, women $2,034, p<0.01). In this population with pain and cancer, there was no clear relationship between healthcare costs and pain severity. These treatment patterns requiring further exploration including the prevalence of peptic ulcer/GORD drugs, and lipid lowering agents and the higher healthcare costs for men. ACTRN12615000064505. World Health Organisation unique trial number U1111-1164-4649. Registered 23 January 2015.

Background Almost 45% of the world’s population resides in rural locations. Despite this, access to best evidence-based palliative care is variable. Reforming and optimising rural palliative care is dependent upon positive public policy. Aim To map country- and jurisdiction- level policy against the elements of care required to optimise rural palliative care provision in high-income countries. Design and data sources An environmental scan of policies denoting actions informing rural palliative care access and delivery in high-income countries, performed using a modified version of Khalil and colleagues’ five-stage scoping review methodology. Grey literature was searched in November 2024 across Australia, Canada, Ireland, Japan, New Zealand, Norway, Finland, United Kingdom, and the United States of America. Rural specific policy actions were mapped against the World Health Organization’s Innovative Care for Chronic Conditions Framework (ICCCF). Results Of 3809 records screened, eight country-level and eight jurisdiction-level palliative care policies denoting 113 rural palliative care specific actions across 13 of 18 WHO ICCCF elements of care were identified. Over 90% of actions addressed macro-( n  = 52, 47%) or meso- level ( n  = 50; 44%) elements, and two-thirds addressed five sub-categories: 1) Build workforce capacity; 2) Develop rural specific teams, committees and positions; 3) Identify, maintain, and scale up new and/or existing rural palliative care models; 4) Increase access to integrated, seamless rural palliative care; and 5) Identify gaps in rural service provision and service planning. Conclusions While there is a wide spread of actions across macro- and meso- level WHO ICCCF elements, there is limited focus on micro- level elements, and a lack of complementary actions within documents across the three layers of care. Country-level policies are pivotal to setting the tone, while jurisdiction-level policies can further target the specific needs of rural communities within each area’s unique constraints. Findings support a growing need to devise methodologies informing development and measurement of healthcare policy. Optimising rural palliative care policy demands cross-sector participation and the involvement of consumers, to co-design actions which accurately reflect the unique and nuanced rural environment and its citizens, and be capable of bridging disparities.

Background The United Nations (UN) 2015 ‘Mandela Rules’ stipulates that people in prison will have access to equivalent healthcare to other community members. This expectation has challenged prisons in high-income countries to strengthen healthcare delivery to better meet the needs of the growing number of incarcerated First Nations and older, frailer people, many with complex healthcare needs. Yet little is known about correctional and justice health professionals’ (‘prison workforces’) capacity to identify and support people in prisons with complex healthcare needs. Aim To identify the post-Mandela Rules strategies that have increased the prison workforce’s capacity to provide evidence-based healthcare. Methods A systematic review. Three health and Criminal Justice databases were searched (2015-June 2024) to identify empirical data regarding the ‘individual’, ‘organizational’ and ‘community’ capacity-building strategies employed to improve the prison workforce's healthcare capabilities. Kirkpatrick's Model was used to assess the evaluation level, while Popay’s narrative synthesis was applied to the extracted data. Findings are reported according to the PRISMA Statement. Results Of the 20 included articles, the highest level of evidence (level III) was generated by a mixed methods study, with most ( n = 17) generating low-level (Level IV) evidence. Ten studies evaluated mental health behavioral capacity-building strategies, with limited attention given to other chronic illnesses, ageing, palliative care, or cultural needs. More complex capacity-building strategies that included individual, organizational, and community-level elements generated the best outcomes. The best individual-level capacity-building outcomes were more frequent (> 5 occasions) interactive health-related education delivered in partnership with external experts. However, the commonly employed capacity-building strategies were short didactic education sessions, which were less effective. Conclusion If prisons are to meet the UN Mandela Rules’ aspirations, more impactful individual, organizational and community-level capacity-building strategies are urgently required. Transitioning to co-designed, interactive, culturally sensitive, evidence-based approaches is crucial if the prison workforce is to better recognize and effectively respond to the needs of more culturally diverse and older, sicker populations with complex healthcare needs. Trial registration Prospero CRD42023410564.

Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) “It’s always on the back-burner”: Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.

Background: While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored. Aim: The aim of this article is to critically examine the meaning of home for dying patients and their families. Design: The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period. Setting/participants: Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians (n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes. Results: Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning this relationship: ‘No place like home’; ‘Safety, home and the hospital’; ‘Hospital “becomes” home’; ‘Home “becomes” hospital’; ‘Hospital and “connections with home”’; and ‘The built environment’. Conclusion: Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.