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BACKGROUND: Males have a shorter life expectancy than females. Men are less likely to seek the advice of a health professional or utilise preventive health services and programs. This study seeks to explore health literacy and the characteristics affecting this among Australian men. METHODS: Four hundred and thirty-one adult males engaged with the New South Wales Rural Fire Service, completed an online cross-sectional survey, undertaken from September - November 2022. The survey tool captured demographic data, health status and lifestyle risk characteristics. Health literacy was measured using the 44-item Health Literacy Questionnaire (HLQ). Descriptive statistics, frequencies, percentages, means and standard deviations, were used to describe the sample. Interferential statistics, including the Mann-Whitney U Test and the Kruskal-Wallis Test, were used to explore differences between demographics and HLQ scales. RESULTS: For the first 5 scales (4-point Likert scale), the lowest score was seen for 'Appraisal of health information' (Mean 2.81; SD 0.52) and the highest score was seen for 'Feeling understood and supported by healthcare providers ' (Mean 3.08; SD 0.64). For the other 4 scales (5-point Likert scale), the lowest score was seen for 'Navigating the healthcare system' (Mean 3.74; SD 0.69). The highest score was seen for 'Understand health information well enough to know what to do' (Mean 4.10; SD 0.53). Age, income level and living in an urban/rural location were significantly related to health literacy scales. CONCLUSIONS: This study provides new insight into men's health literacy and the factors impacting it. This knowledge can inform future strategies to promote men's engagement with health services and preventive care.
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Letramento em Saúde , Humanos , Masculino , Letramento em Saúde/estatística & dados numéricos , Estudos Transversais , Adulto , Pessoa de Meia-Idade , New South Wales , Inquéritos e Questionários , Adulto Jovem , Idoso , Adolescente , População Rural/estatística & dados numéricosRESUMO
AIM: To explore men's health status and lifestyle risk profile and understand how they engage with preventive health care. DESIGN: A cross-sectional survey within a sequential mixed-methods project. METHODS: Four hundred thirty-one adult males, working or volunteering for the New South Wales Rural Fire Service (NSW RFS) completed the survey between September and November 2022. The survey captured demographic data, health status and lifestyle characteristics, as well as engagement with preventive health care. RESULTS: Nearly three-quarters of respondents (n = 314; 72.8%) described themselves as being in good or very good health. Just 18.6% of respondents recorded a 'healthy' body mass index (BMI), despite only 29.9% having been told by a doctor that they were overweight/obese. Most (n = 344; 79.8%) respondents identified having a regular general practitioner (GP)/general practice. Nearly all respondents described having had blood pressure measurements (n = 403; 93.5%) and lipid profile (n = 346, 80.3%) in the last 2 years. Having a regular GP/general practice was significantly associated with engaging in all preventive and screening activities, except having a dental check. CONCLUSION: Our findings demonstrate a significant opportunity to support men to reduce lifestyle risk, despite their current engagement with general practice. Strategies need to support men and health professionals to have conversations about risk and risk reduction to promote behaviour change. Nurses are well placed to provide preventive health care to men in general practice. The general practice nurse has a key role in communicating lifestyle risk, supporting patients in modifying their behaviours and reducing the impact of such factors on their health and well-being. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Communicating the importance of lifestyle risk factors is imperative in supporting men to achieve behavioural change in the reduction in lifestyle risk. Nurses are well-placed to take a leading role in this area. REPORTING METHOD: The STROBE checklist guided reporting. PATIENT OR PUBLIC CONTRIBUTION: Survey development was undertaken in collaboration with members of the NSW RFS. Key contacts within the organisation were involved in reviewing the analysis and interpretation of findings.
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AIM: To describe the pre-implementation context and implementation approach, for a clinician researcher career pathway. BACKGROUND: Clinician researchers across all health disciplines are emerging to radically influence practice change and improve patient outcomes. Yet, to date, there are limited clinician researcher career pathways embedded in clinical practice for nurses and midwives. METHODS: A qualitative descriptive design was used. DATA SOURCES: Data were collected from four online focus groups and four interviews of health consumers, nursing and midwifery clinicians, and nursing unit managers (N = 20) between July 2022 and September 2023. RESULTS: Thematic and content analysis identified themes/categories relating to: Research in health professionals' roles and nursing and midwifery, and Research activity and culture (context); with implementation approaches within coherence, cognitive participation, collective action and reflexive monitoring (Normalization Process Theory). CONCLUSIONS: The Pathway was perceived to meet organizational objectives with the potential to create significant cultural change in nursing and midwifery. Backfilling of protected research time was essential. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The Pathway was seen as an instrument to empower staff, foster staff retention and extend research opportunities to every nurse and midwife, while improving patient experiences and outcomes. IMPACT: Clinicians, consumers and managers fully supported the implementation of clinician researchers with this Pathway. The Pathway could engage all clinicians in evidence-based practice with a clinician researcher leader, effect practice change with colleagues and enhance patient outcomes. REPORTING METHOD: This study adheres to relevant EQUATOR guidelines using the COREG checklist. PATIENT OR PUBLIC CONTRIBUTION: Health consumers involved in this research as participants, did not contribute to the design or conduct of the study, analysis or interpretation of the data, or in the preparation of the manuscript.
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AIMS: To examine registered nurses' attitudes about end-of-life care and explore the barriers and facilitators that influence the provision of high-quality end-of-life care. DESIGN: A sequential explanatory mixed methods research design was used. METHODS: An online cross-sectional survey was distributed to 1293 registered nurses working in five different hospitals in the Kingdom of Saudi Arabia. The Frommelt Attitudes Towards Care of the Dying Scale was used to assess nurses' attitudes towards end-of-life care. Following the survey, a subset of registered nurses were interviewed using individual semi-structured interviews. RESULTS: Four hundred and thirty-one registered nurses completed the online survey, and 16 of them participated in individual interviews. Although nurses reported positive attitudes towards caring for dying patients and their families in most items, they identified negative attitudes towards talking with patients about death, their relationship with patients' families and controlling their emotions. The individual interview data identified the barriers and facilitators that registered nurses experience when providing end-of-life care. Barriers included a lack of communication skills and family and cultural and religious resistance to end-of-life care. The facilitators included gaining support from colleagues and patients' families. CONCLUSION: This study has identified that while registered nurses hold generally favourable attitudes towards end-of-life care, they have negative attitudes towards talking with patients and families about death and managing their emotional feelings. RELEVANCE TO CLINICAL PRACTICE: Education providers and leaders in healthcare settings should consider developing programmes for undergraduate nurses and nurses in clinical practice to raise awareness about the concept of death in a cross-section of cultures. Nurses' attitudes towards dying patients will be enhanced with culture-specific knowledge which will also enhance communication and coping methods. REPORTING METHOD: This study used the Mixed Methods Article Reporting Standards (MMARS).
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Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros , Assistência Terminal , Humanos , Estudos Transversais , Atitude do Pessoal de Saúde , Assistência Terminal/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: To maintain and improve the quality of the cancer nursing workforce, it is crucial to understand the factors that influence retention and job satisfaction. We aimed to investigate the characteristics of cancer nurses in Australia and identify predictors of job satisfaction. METHODS: We analysed data from an anonymous cross-sectional survey distributed through the Cancer Nurses Society Australia membership and social media platforms from October 2021 to February 2022. The survey was compared to national nursing registration data. Data were analysed with non-parametric tests, and a stepwise, linear regression model was developed to best predict job satisfaction. RESULTS: Responses were received from 930 cancer nurses. Most respondents (85%) described themselves as experienced nurses, and more than half had post-graduate qualifications. We identified individual, organizational, and systemic factors that contribute to job satisfaction and can impact in workforce shortages. The findings include strategies to address and prioritize workforce challenges. There were 89 different titles for advanced practice nursing roles. Managing high workload was a reported challenge by 88%. Intention to stay less than 10 years was reported by nearly 60%; this was significantly correlated with job satisfaction and age. Significantly higher scores for job satisfaction were associated with those who had career progression opportunities, career development opportunities, adequate peer support and a clearly defined scope of role. Conversely, job satisfaction scores decreased the more people agreed there was a lack of leadership and they had insufficient resources to provide quality care. CONCLUSION: Cancer nurses are critical to the delivery of cancer care however, the workforce faces multiple challenges. This study provides an understanding of the Australian cancer nursing workforce characteristics, their roles and activities, and highlights important considerations for retaining nurses in the profession.
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BACKGROUND: Nurses play an essential role in patient safety. Inadequate nursing physical assessment and communication in handover practices are associated with increased patient deterioration, falls and pressure injuries. Despite internationally implemented rapid response systems, falls and pressure injury reduction strategies, and recommendations to conduct clinical handovers at patients' bedside, adverse events persist. This trial aims to evaluate the effectiveness, implementation, and cost-benefit of an externally facilitated, nurse-led intervention delivered at the ward level for core physical assessment, structured patient-centred bedside handover and improved multidisciplinary communication. We hypothesise the trial will reduce medical emergency team calls, unplanned intensive care unit admissions, falls and pressure injuries. METHODS: A stepped-wedge cluster randomised trial will be conducted over 52 weeks. The intervention consists of a nursing core physical assessment, structured patient-centred bedside handover and improved multidisciplinary communication and will be implemented in 24 wards across eight hospitals. The intervention will use theoretically informed implementation strategies for changing clinician behaviour, consisting of: nursing executive site engagement; a train-the-trainer model for cascading facilitation; embedded site leads; nursing unit manager leadership training; nursing and medical ward-level clinical champions; ward nurses' education workshops; intervention tailoring; and reminders. The primary outcome will be a composite measure of medical emergency team calls (rapid response calls and 'Code Blue' calls), unplanned intensive care unit admissions, in-hospital falls and hospital-acquired pressure injuries; these measures individually will also form secondary outcomes. Other secondary outcomes are: i) patient-reported experience measures of receiving safe and patient-centred care, ii) nurses' perceptions of barriers to physical assessment, readiness to change, and staff engagement, and iii) nurses' and medical officers' perceptions of safety culture and interprofessional collaboration. Primary outcome data will be collected for the trial duration, and secondary outcome surveys will be collected prior to each step and at trial conclusion. A cost-benefit analysis and post-trial process evaluation will also be undertaken. DISCUSSION: If effective, this intervention has the potential to improve nursing care, reduce patient harm and improve patient outcomes. The evidence-based implementation strategy has been designed to be embedded within existing hospital workforces; if cost-effective, it will be readily translatable to other hospitals nationally. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ID: ACTRN12622000155796. Date registered: 31/01/2022.
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OBJECTIVES: It is well established that cancer nurses and advanced practice nurses (APN) are critical to the delivery of high-quality, accessible, safe, and affordable cancer care globally. Specialized cancer nurses and APNs with a strong foundation in the pillars of nursing practice (clinical, leadership, education, and research) are essential to optimize patient outcomes, create increased cost-efficiencies through innovative models of care delivery, and can further leverage interprofessional collaboration in cancer care. To address the existing shortcomings in cancer control, Australian cancer nurses, including APNs, and cancer nurses and APNs globally, need an evidence-informed consensus drive framework to harmonize clinical, educational and career pathways leading to specialization, advanced practice, promotion, and equitable and accessible education. METHODS: Critical perspective. RESULTS: Scoping work has begun to build on the 2009 seminal Australian EdCaN framework, with ambitions to develop a contemporary practice and career framework for all cancer nurses which details clear pathways to specialized and APN roles inclusive of navigating to and through direct clinical care, research, academia, education, and management or executive leadership. CONCLUSIONS: A revised framework that is cognizant of the changing landscape of contemporary cancer care, and the growing diversity of nursing roles is needed to address the imminent nursing workforce crisis. IMPLICATIONS FOR NURSING PRACTICE: The revised framework may support the implementation of the newly released Australian Cancer Plan and provide a career pathway model that may be adopted internationally, including in low- and middle-income countries.
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Papel do Profissional de Enfermagem , Enfermagem Oncológica , Humanos , Enfermagem Oncológica/educação , Austrália , Neoplasias/enfermagem , Feminino , Masculino , Prática Avançada de EnfermagemRESUMO
Post-transplantation revaccination uptake of childhood vaccines in adult hematopoietic stem cell transplantation (HSCT) survivors is suboptimal, increasing the risk of infectious morbidity and mortality within this population. We systematically reviewed the literature for factors related to revaccination uptake, as well as the barriers and facilitators that affect successful revaccination. We conducted a scoping review searching PubMed, CINAHL, Embase, and Web of Science in March 2023. Two independent reviewers performed study selection using the complete dual review process. Data were extracted using a standard form. Factors were characterized as demographic, clinical, or social determinants of health that affected revaccination uptake. Barriers and facilitators were categorized using the constructs from the World Health Organization Behavioural and Social Drivers Framework. Our searches yielded 914 sources, from which 15 publications were selected (5 original research and 10 quality improvement initiatives). More than one-half of the reports listed factors associated with poorer uptake, predominately clinical factors, followed by social determinants of health, then demographic factors. Nearly all the reports described barriers to successful revaccination uptake, with most of these falling into the "practical issues" construct. Most of the reports described facilitators, nearly all related to health care system improvements associated with improved revaccination uptake. Although this review provides a good starting point for understanding impediments to successful revaccination after HSCT, this review reveals that we lack sufficient evidence to drive targeted interventions to improve uptake. More research is needed, focusing on survivors' voices to inform our knowledge of barriers and facilitators to complete revaccination after HSCT, exploring behavioral and social drivers within this population, and examining the care delivery models that may complicate vaccine delivery in this population.
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Atenção à Saúde , Transplante de Células-Tronco Hematopoéticas , Adulto , Humanos , Imunização SecundáriaRESUMO
This scoping review summarizes the evidence regarding healthcare resource utilization (HRU) and costs associated with allogeneic hematopoietic stem cell transplantation (allo-HSCT). This study was conducted in accordance with the Joanne Briggs Institute methodology for scoping reviews. The PubMed, Embase, and Health Business Elite Electronic databases were searched, in addition to grey literature. The databases were searched from inception up to November 2022. Studies that reported HRU and/or costs associated with adult (≥18 years) allo-HSCT were eligible for inclusion. Two reviewers independently screened 20% of the sample at each of the 2 stages of screening (abstract and full text). Details of the HRU and costs extracted from the study data were summarized, based on the elements and timeframes reported. HRU measures and costs were combined across studies reporting results defined in a comparable manner. Monetary values were standardized to 2022 US Dollars (USD). We identified 43 studies that reported HRU, costs, or both for allo-HSCT. Of these studies, 93.0% reported on costs, 81.4% reported on HRU, and 74.4% reported on both. HRU measures and cost calculations, including the timeframe for which they were reported, were heterogeneous across the studies. Length of hospital stay was the most frequently reported HRU measure (76.7% of studies) and ranged from a median initial hospitalization of 10 days (reduced-intensity conditioning [RIC]) to 73 days (myeloablative conditioning). The total cost of an allo-HSCT ranged from $63,096 (RIC) to $782,190 (double umbilical cord blood transplantation) at 100 days and from $69,218 (RIC) to $637,193 at 1 year (not stratified). There is heterogeneity in the reporting of HRU and costs associated with allo-HSCT in the literature, making it difficult for clinicians, policymakers, and governments to draw definitive conclusions regarding the resources required for the delivery of these services. Nevertheless, to ensure that access to healthcare meets the necessary high cost and resource demands of allo-HSCT, it is imperative for clinicians, policymakers, and government officials to be aware of both the short- and long-term health resource requirements for this patient population. Further research is needed to understand the key determinants of HRU and costs associated with allo-HSCT to better inform the design and delivery of health care for HSCT recipients and ensure the quality, safety, and efficiency of care.
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Custos de Cuidados de Saúde , Transplante de Células-Tronco Hematopoéticas , Transplante de Células-Tronco Hematopoéticas/economia , Humanos , Custos de Cuidados de Saúde/estatística & dados numéricos , Transplante Homólogo/economia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Recursos em Saúde/economia , Recursos em Saúde/estatística & dados numéricosRESUMO
PURPOSE: Survivors of blood and marrow transplantation (BMT) require life-long follow-up involving both tertiary transplant and primary care services. This paper explores the attitudes and preferences of BMT survivors and their carers regarding the transition from BMT centre care to primary care. METHODS: This qualitative study involved semi-structured interviews with BMT survivors and carers from New South Wales, Australia. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Twenty-two BMT survivors and six carers were interviewed. Two themes emerged: (1) 'Relationships with health professionals' and (2) 'Challenges of long-term care'. Participants, particularly rural/regional survivors, had diverse views on the availability of community BMT expertise and identified a range of strategies to optimise care for BMT survivors. CONCLUSIONS: These results highlight the importance BMT survivors and carers place on their relationships with, and ongoing access to, specialised BMT teams for long-term care. While some are happy to receive community-based care, concerns exist about the capacity of primary care providers, particularly in rural and regional areas. Improved support, communication and coordination between BMT centres and primary care may help facilitate a person-centred, sustainable shared care model. Provider education, use of telehealth and clear delineation of roles and responsibilities may assist in this transition. IMPLICATIONS FOR CANCER SURVIVORS: As BMT survivors live longer post-treatment, transitions of care and sustainable long-term care models are needed. A shared care approach, integrating specialised BMT teams and local primary care, may optimise outcomes but requires further development to balance accessibility, preferences, and specialised care needs.
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OBJECTIVES: Amidst the fulfilment of making a positive impact on patients' lives, cancer nurses also contend with high workloads, limited resources, and barriers to career advancement. Understanding the perceptions of cancer nurses is essential in addressing these challenges and fostering an environment that promotes both professional satisfaction and optimal patient care. Our aim was to explore Australian cancer nurses' experiences and perspectives of workforce challenges and their proposed solutions to address them. METHODS: The Cancer Nurses Society Australia workforce cross-sectional survey was distributed online in 2022 through professional networks and social media. Free text responses to open-ended questions were analyzed using qualitative content analysis and inductive processes. RESULTS: Responses from 601 cancer nurses highlight the intricate interplay between rewards and obstacles experienced by the profession and identify key areas for improvement. Positive and negative quotes highlight the passion of cancer nurses which were summarized into themes and subthemes: 1) Finding fulfilment while struggling against the tide. While feeling undervalued and facing workload pressures, burnout and limited opportunities for career progression, nurses express love for their jobs, finding it rewarding yet emotionally challenging. 2) Grassroots solutions versus organizational inertia. Proposed solutions included addressing nurse-to-patient ratios, proactive succession planning, more specific education, dedicated time for learning, and mentorship and career development programs. Perceived barriers to initiatives included lethargic management and resistance to change. Networking opportunities, appropriate remuneration, and interdisciplinary teamwork with an appreciation of individual expertise are desired. CONCLUSIONS: Our findings give a voice to the cancer nurses of Australia. Nurses identified a range of solutions to address workforce challenges. IMPLICATIONS FOR NURSING PRACTICE: Addressing the systemic issues that contribute to high workload and impede nurses' well-being and their recognition, and promoting policies to support professional growth will increase satisfaction, enhance patient care outcomes, and contribute to a sustainable workforce.
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AIMS: To examine registered nurses' (RNs) behavioural, normative and control beliefs about end-of-life care for patients who are diagnosed with advanced and life-limiting illnesses; and to identify the barriers and facilitators they experience when providing end-of-life care. DESIGN: A sequential explanatory mixed methods study. METHOD: An online cross-sectional survey was conducted using the Care for Terminally Ill Patient tool among 1293 RNs working across five hospitals in the Kingdom of Saudi Arabia. Online individual semi-structured interviews with a subgroup of survey respondents were then undertaken. Data were collected between October 2020 to February 2021. RESULTS: A total of 415 RNs completed the online survey, with 16 of them participating in individual interviews. Over half of the participants expressed the belief that end-of-life care is most efficiently delivered through multidisciplinary team collaboration. The majority of participants also believed that discussing end-of-life care with patients or families leads to feelings of hopelessness. Paradoxically, the study revealed that more than half of the participants held the negative belief that patients at the end of life should optimally receive a combination of both curative and palliative care services. The results showed that nurses' beliefs were significantly associated with their age, religion, ward type, level of education and frequency of providing end-of-life care. Data from the qualitative interviews identified four themes that explored RNs' beliefs and its related factors. The four themes were 'holistic care', 'diversity of beliefs', 'dynamics of truth-telling' and 'experiences of providing end-of-life care.' IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Wherever possible, patients at the end-of-life should be cared for in specialist settings by multidisciplinary teams to ensure effective, high-quality care. Where this is not possible, organisations should ensure that teams of multidisciplinary staff, including nurses, receive education and resources to support end-of-life care in non-specialist settings. Hospitals that employ foreign-trained nurses should consider providing targeted education to enhance their cultural competence and reduce the impact of different beliefs on end-of-life care.
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Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros , Assistência Terminal , Humanos , Estudos Transversais , Doente TerminalRESUMO
Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is an intensive but effective treatment for malignant and non-malignant diseases. However, long-term survival often comes at a cost, with survivors experiencing chronic morbidity and are at risk of relapse and secondary malignancy. This study aimed to describe decisional regret in a large cohort of Australian long-term allo-HSCT survivors. A cross-sectional survey was conducted with 441 adults in New South Wales, assessing quality of life (QoL), psychological, social, demographic, and clinical variables. Less than 10% of survivors expressed regret, with chronic graft-versus-host disease being the most important clinical factor. Psycho-socioeconomic factors such as depression, lower QoL scores, lower household income, higher treatment burden, and not resuming sex post-HSCT were also associated with regret. Findings highlight the need for valid informed consent and ongoing follow-up and support for allo-HSCT survivors dealing with life post-transplant. Nurses and healthcare professionals play a critical role in addressing decisional regret in these patients.
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Transplante de Células-Tronco Hematopoéticas , Qualidade de Vida , Adulto , Humanos , Estudos Transversais , Austrália , Transplante de Células-Tronco Hematopoéticas/psicologia , Sobreviventes/psicologiaRESUMO
AIMS: Given the increasing number of Hematopoietic Stem Cell Transplantations (HSCT) performed world-wide, the increasing likelihood of survival following HSCT, and the profound physical, psychosocial, and emotional impact of HSCT on survivors, their carers and families, it is important to identify factors that may contribute to or support post-traumatic growth (PTG) after transplant. In this study, we aimed to investigate the prevalence of PTG in an Australian cohort of long-term allogeneic HSCT survivors and describe associations between PTG and relevant clinical, sociodemographic and psychological variables. METHODS: This was a large, multi-centre, cross sectional survey of Australian HSCT-survivors inviting all those transplanted in New South Wales between 2000 and 2012. Respondents completed the PTG Inventory (PTGI), the Sydney Post-BMT Survey, FACT-BMT, DASS 21, The Chronic Graft versus Host Disease (GVHD) Activity Assessment-Patient Self-Report (Form B), the Lee Chronic GVHD Symptom Scale, and the Fear of Cancer Recurrence Scale. Data was analysed using independent t-tests, one-way analysis of variance, and pearson's correlations, and hierarchical multiple regression adjusted for potential confounders and to ascertain independent associations of explanatory variables with PTG. RESULTS: Of 441 respondents, 99% reported some level of PTG with 67% reporting moderate to high levels of PTG. Female gender, younger age, complementary therapy use, anxiety, psychological distress and psychosocial care, and higher quality of life were associated with higher levels of PTG. Importantly, we also found that PTG was not associated with either chronic GVHD or post-HSCT morbidity. CONCLUSIONS: In this study - the largest study of PTG in long-term allogeneic HSCT survivors - we found that growth appears ubiquitous, with 99% of survivors reporting some degree of PTG and 67% reporting moderate-high levels of PTG. Importantly, we found no association with GVHD or chronic physical post-HSCT morbidity, or adverse financial, occupational or sexual impacts. This suggests that it is the necessity for and experience of, HSCT itself that foments personal growth. Accordingly, healthcare professionals should be alert to the profound and wide-ranging impact of HSCT - and the degree to which survivor's may experience PTG. Identifying interventions that may assist HSCT survivors cope and building their resilience is of utmost importance.
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Síndrome de Bronquiolite Obliterante , Doença Enxerto-Hospedeiro , Transplante de Células-Tronco Hematopoéticas , Crescimento Psicológico Pós-Traumático , Feminino , Humanos , Estudos Transversais , Qualidade de Vida , Austrália/epidemiologiaRESUMO
BACKGROUND: Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integration of genomics into the care of patients with palliative care needs has not received the critical attention it requires, and health professionals report a lack of policy guidance to support them to overcome practice barriers. SUMMARY: To identify policy recommendations related to: (1) integrating genomics into the care of patients with palliative care needs and their families, and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomics policies mentioned palliative care in the background information. Across all policies, guidance related to "Delivering Family-Centred Care" was the most frequent recommendation related to care of the family unit, (n=62/78, 79.5%). KEY MESSAGES: We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals, reducing the personal and clinical benefits of genomics to patients and relatives. Framing genomic information as family-centred care enables policy makers to communicate the value of genomics to palliative care that will resonate with genomic and palliative care stakeholders. These findings increase awareness among policy makers of the benefits of genomic information to patients with palliative care needs and their families and call for incorporation of appropriate recommendations into palliative care and genomic policy.
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We describe the case of an eighty-four-year-old man with disseminated lung cancer who had been receiving palliative care in the hospital and was found by nursing staff unresponsive, with clinically obvious signs of death, including rigor mortis. Because there was no documentation to the contrary, the nurses commenced cardiopulmonary resuscitation and called a code blue, resulting in resuscitative efforts that continued for around twenty minutes. In discussion with the hospital ethicist, senior nurses justified these actions, mainly citing disciplinary and medicolegal concerns. We argue that moral harms arise from CPR performed on a corpse and that legal concerns about failing to perform it are unfounded. We contend that such efforts are an unintended consequence of managerialist policies mandating do-not-resuscitate orders and advance care plans and of defensive practices that can value the interests of institutions and practitioners over those of patients. Health management teaching should include managerialism and its pitfalls, while clinician training should prioritize ethical reasoning and legal knowledge over defensive practice.
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Diretivas Antecipadas , Reanimação Cardiopulmonar , Masculino , Humanos , Idoso de 80 Anos ou mais , Medicina Defensiva , Ordens quanto à Conduta (Ética Médica)RESUMO
BACKGROUND: Allogenic blood and marrow transplant (allo-BMT) is an arduous treatment used increasingly for many life-threatening conditions. Recognition of the profound impacts of the long term and late effects is ever-growing, as is the healthcare workload (treatment burden) of survivorship. PURPOSE: To quantify the treatment burden of long-term survival following allo-BMT, regarding the range of health services, therapies and investigations accessed by survivors. METHODS: A large, multi-centre cross-sectional survey of adult allo-BMT survivors transplanted between 2000 and 2012 in Sydney, Australia. Participants completed six validated instruments and one purposed designed for the study, the Sydney Post BMT Study (SPBS), answering questions relating to medication use, medical treatments, referrals, assessments and frequency of hospital/clinic attendance. RESULTS: Of the 441 allo-BMT survivors, over a quarter who were more than 2 years post BMT attended the hospital clinic at least monthly, and 26.7% required a number of regular medical procedures (e.g. venesection, extracorpororeal photopheresis). Specialist medical and allied health referral was very common, and compliance with internationally recommended long-term follow-up (LTFU) care was suboptimal and decreased as time from BMT increased. CONCLUSION: Respondents reported a large medication (conventional and complementary), screening, assessment and health care burden. IMPLICATIONS FOR CANCER SURVIVORS: Treatment burden contributes significantly to the 'workload' of survivorship and can have a severe and negative impact on BMT survivors, carers and the healthcare system-making it difficult to comply with optimal care. Clinicians must be primed with skills to identify survivors who are overburdened by the health care required for survival and develop strategies to help ease the burden.
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Medula Óssea , Transplante de Células-Tronco Hematopoéticas , Adulto , Austrália , Transplante de Medula Óssea/métodos , Estudos Transversais , HumanosRESUMO
Background: Melanoma genetic testing reportedly increases preventative behaviour without causing psychological harm. Genetic testing for familial melanoma risk is now available, yet little is known about dermatologists' perceptions regarding the utility of testing and genetic testing ordering behaviours. Objectives: To survey Australasian Dermatologists on the perceived utility of genetic testing, current use in practice, as well as their confidence and preferences for the delivery of genomics education. Methods: A 37-item survey, based on previously validated instruments, was sent to accredited members of the Australasian College of Dermatologists in March 2021. Quantitative items were analysed statistically, with one open-ended question analysed qualitatively. Results: The response rate was 56% (256/461), with 60% (153/253) of respondents between 11 and 30 years post-graduation. While 44% (112/252) of respondents agreed, or strongly agreed, that genetic testing was relevant to their practice today, relevance to future practice was reported significantly higher at 84% (212/251) (t = -9.82, p < 0.001). Ninety three percent (235/254) of respondents reported rarely or never ordering genetic testing. Dermatologists who viewed genetic testing as relevant to current practice were more likely to have discussed (p < 0.001) and/or offered testing (p < 0.001). Respondents indicated high confidence in discussing family history of melanoma, but lower confidence in ordering genetic tests and interpreting results. Eighty four percent (207/247) believed that genetic testing could negatively impact life insurance, while only 26% (63/244) were aware of the moratorium on using genetic test results in underwriting in Australia. A minority (22%, 55/254) reported prior continuing education in genetics. Face-to-face courses were the preferred learning modality for upskilling. Conclusion: Australian Dermatologists widely recognise the relevance of genetic testing to future practice, yet few currently order genetic tests. Future educational interventions could focus on how to order appropriate genetic tests and interpret results, as well as potential implications on insurance.