Attitudes to End-of-Life Care and Voluntary Assisted Dying Amongst Members of the Australian Jewish community.

The implementation of voluntary assisted dying (VAD) in the Australian State of Victoria in 2019 has stimulated discussions about end-of-life care and dying in many communities. Various attempts have been made to represent the attitudes of the Jewish community, a distinct culturally and linguistically diverse (CALD) group, in terms that suggest a unified set of opinions that opposes VAD policies. This research aimed to explore attitudes to VAD in the context of end-of-life care held by members of the Victorian Jewish community. A descriptive qualitative methodological design was employed. Ten Victorians who identify as Jewish were recruited and participated in in-depth, semi-structured interviews. Reflexive thematic analysis was carried out on the transcripts to identify key themes, attitudes and preferences in relation to end-of-life care, death and dying, and VAD. Three themes were identified: "complexity and variation", "similarities", and "factors influencing attitudes to VAD and end-of-life care". A significant degree of diversity was apparent, ranging from highly supportive of VAD to advocacy for a total repeal of the policy. The results indicate that images of how Victorian Jewish individuals feel towards VAD based on essentialised notions about the community and belief systems are not supported by the evidence. In reality, considerable diversity of attitudes exists towards VAD and end-of-life care. We conclude that it is important that policymakers and members of the broader society avoid stereotypes that falsely characterise this specific community and, by implication, other CALD groups, particularly in terms that ignore internal diversity regarding belief systems, social attitudes and ethical perspectives.

Making the unbearable, bearable: Qualitative examination of patient, family and nurses' perspectives on the role and value of specialist metastatic breast care nurses.

PURPOSE: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet. METHOD: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically. RESULTS: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition. CONCLUSIONS: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC.

The hidden costs of the intercollegiate membership of the Royal College of surgeons examinations: Can trainees afford it?

BACKGROUND: The Intercollegiate Membership of the Royal College of Surgeons (MRCS) examination is a mandatory requirement for higher specialty surgical training in the UK. However, there is a significant economic impact on trainees which raises the question of whether the costs of this exam hinder surgical career progression. This study explores the burden of these exams on trainees. METHODS: A 37-point questionnaire was distributed to all trainees who were preparing for or have sat MRCS examinations. Univariate analyses included the cost of the preparatory resources, extra hours worked to pay for these and the examinations, and the number of annual leave (AL) days taken to prepare. Pearson correlation coefficients were used to identify possible correlation between monetary expenditure and success rate. RESULTS: On average, trainees (n â€‹= â€‹145) spent £332.54, worked 31.2 â€‹h in addition to their rostered hours, and used 5.8 AL days to prepare for MRCS Part A. For MRCS Part B/ENT, trainees spent on average £682.92, worked 41.7 extra hours, and used 5 AL days. Overall, the average trainee spent 5-9% of their salary and one-fifth of their AL allowance to prepare for the exams. There was a positive correlation between number of attempts and monetary expenditure on Part A preparation (r(109)=0.536, p â€‹< â€‹0.001). CONCLUSIONS: There is a considerable financial and social toll of the MRCS examination on trainees. Reducing this is crucial to tackle workforce challenges that include trainee retention and burnout. Further studies exploring study habits can help reform study budget policies to ease this pressure on trainees.

Choreographing a good death: Carers' experiences and practices of enacting assisted dying.

The proliferation of assisted dying legislative reforms globally is a significant change in the social and medico-legal landscape of end-of-life care. Understanding the impacts of these legislative reforms on family members who care for a dying person is vital, yet under-theorised in research. In this article, drawing on semi-structured interviews with 42 carers for a person who has sought assisted dying in Australia, and extending ideas of ontological choreography we explore the new and complex choreographies enacted by carers in their endeavour to arrange a 'good death' for the dying person. We find that desires to fulfil the dying person's wishes are often accompanied by normative pressures, affective tensions and complexities in bereavement. Enacting assisted dying requires carers to perform a repertoire of highly-staged practices. Yet, institutional obstacles and normative cultural scripts of dying can constrain carer assisted dying practices. Understanding the nuances of carers' experiences and how they navigate this new end-of-life landscape, we argue, provides critical insights about how assisted dying legislation is producing new cultural touchpoints for caring at the end of life. Moreover, we show how emerging cultural scripts of assisted dying are impacting in the lives of these carers.

Professionally led support groups for people living with advanced or metastatic cancer: a systematic scoping review of effectiveness and factors critical to implementation success within real-world healthcare and community settings.

PURPOSE: To examine the effectiveness of professionally led support groups for people with advanced or metastatic cancer, and identify factors critical to implementation success within real-world settings. METHODS: Databases (MEDLINE; PsychINFO; CINAHL) and grey literature were searched for empirical publications and evaluations. Articles were screened for eligibility and data systematically extracted, charted and summarised using a modified scoping review methodology. Implementation factors were mapped using Proctor's implementation framework and the Consolidated Framework for Implementation Research 2.0. RESULTS: A total of 1691 publications were identified; 19 were eligible for inclusion (8 randomised controlled trials, 7 qualitative studies, 2 cohort studies, 2 mixed methods studies). Most (n=18) studies focused on tumour-specific support groups. Evidence supported professionally led support groups in reducing mood disturbances (n=5), distress (i.e. traumatic stress, depression) (n=4) and pain (n=2). Other benefits included social connectedness (n=6), addressing existential distress (n=5), information and knowledge (n=6), empowerment and sense of control (n=2), relationships with families (n=2) and communication with health professionals (n=2). Thirteen studies identified factors predicting successful adoption, implementation or sustainment, including acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%). Key determinants of successful implementation included group leaders' skills/experience, mode of operation, travelling distance, group composition and membership and resourcing. CONCLUSIONS: Professionally led tumour-specific support groups demonstrate effectiveness in reducing mood disturbances, distress and pain among patients. Successful implementation hinges on factors such as leadership expertise, operational methods and resource allocation. IMPLICATIONS FOR CANCER SURVIVORS: Professionally led support groups may fill an important gap in supportive care for people with advanced or metastatic cancer.

There but not really involved: The meanings of loneliness for people with chronic illness.

Loneliness is one of the most pressing and rapidly growing contemporary social challenges around the world. Yet we still lack a good understanding of how loneliness is constituted and experienced by those most affected. We conducted semi-structured interviews with 40 people with chronic illness who were experiencing loneliness to explore what loneliness means to them and how it impacts in their daily lives. Drawing on ideas around liquidity and performativity, we identified the relational, temporal and social layers of loneliness. Our analysis revealed the interconnectedness of chronic illness and loneliness in participants' daily lives, as well as how chronic illness shifts temporal orientation, and transforms interpersonal relationships and relationship with self, contributing to the experiences of loneliness. Though participants described the many social conditions that restricted their opportunities for social participation, giving them a sense of being left behind and spectating the social life of others, a rhetoric of loneliness as a problem and responsibility of the individual was still prominent. A narrative of the need to perform social connection emerged in the absence of meaningful social bonds with others. We argue that normative ideals of wellness and positivity circulating in chronic illness communities and society more broadly are implicated in the experience of loneliness for people with chronic conditions. We conclude by considering how more expansive representations of how to live well with chronic illness may be important in reducing personal and collective loneliness.

The incurable self: Negotiating social bonds and dis/connection with metastatic breast cancer.

As the culture of silence that once surrounded cancer has gradually given way to greater public awareness, normative visions of what cancer survivorship should entail have proliferated. These visions emphasise positivity and perseverance in pursuit of cure. While these visions provide comfort to many, for people with metastatic cancer, the emphasis on cure can undermine their sense of belonging to the broader collective of people living with cancer. Drawing on semi-structured interviews with 38 Australian women living with metastatic breast cancer, we explore how incurable cancer inflects understandings of self and transforms interpersonal relationships. Extending ideas around biosociality and belonging, we explore the tenuousness of social bonds, revealing how (in)visibility, (in)authenticity and (in)validation circulate within the daily lives of women with metastatic breast cancer. We conceptualise accounts according to four social bonds: (1) threatened bonds where a relationship is strained by misunderstanding, (2) severed bonds where a relationship is ruptured due to misunderstanding, (3) attuned bonds whereby a relationship is based on shared identification and (4) flexible social bonds when a relationship is based on mutual understanding. More broadly, we illustrate the persistence of normative visions of cancer survivorship and their enduring effects on those whom such visions exclude.

Australians' experiences of COVID-19 during the early months of the crisis: A qualitative interview study.

Introduction: The COVID-19 crisis has wrought major changes to people's lives across the globe since the beginning of the outbreak in early 2020. The "Australians' Experiences of COVID-19" qualitative descriptive study was established to explore how Australians from different geographical areas and social groups experienced the COVID-19 crisis. Methods: Three sets of semi-structured interviews, each with a diverse group of 40 adults across Australia, were completed between 2020 and 2022. This article reports findings from the first set of interviews, conducted by telephone in mid-2020. Results: The participants discussed their experiences of living through this period, which was characterized by strong public health measures to contain the spread of COVID, including a national lockdown and border closures. Interview fieldnotes and verbatim transcripts were used to conduct an interpretive thematic analysis. The analysis is structured around the following five themes covering the quotidian and affective aspects of participants' lives in the early months of the COVID crisis: "disruption to routines;" "habituating to preventive measures;" "social isolation and loneliness;" "changes to work and education;" and "little change to life." A sixth theme concerns how participants responded to our question about what they imagined their lives would be like after the pandemic: "imagining post-COVID life." Discussion: The crisis affected participants' experience of daily life variously according to such factors as their social circumstances and obligations as well as their histories of illness, making visible some of the unequal social and economic effects of the pandemic across different genders, ages, localities and socioeconomic groups. Our participants fell into three roughly equal groups: (i) those who found the lockdown and associated restrictions very difficult; (ii) those who reported feeling barely affected by these conditions; and (iii) those who found benefits to the "slowing down" of life during this period.

Potential inequities in availability of care from breast care nurses: a qualitative study reporting the experiences and perspectives of women with metastatic breast cancer in Australia.

BACKGROUND: International consensus guidelines recommend patients with metastatic breast cancer have access to a nurse experienced in the treatment of metastatic breast cancer. This study aimed to explore women's experiences of supportive care from breast care nurses, including their perspectives on the role breast care nurses currently play in providing support to people with metastatic breast cancer. METHODS: Multiple semi-structured qualitative interviews with 38 women with metastatic breast cancer in Australia. Data relating to nursing care were extracted and analysed using thematic analysis. RESULTS: Three themes were identified: (1) feeling that supportive care needs are unrecognised; (2) confusion about role and relevance of breast care nurse to those with metastatic breast cancer; (3) care from metastatic breast care nurses (when available) was appreciated, valued and beneficial. Participants' experiences differed in relation to ease of access to, amount of contact with, and level of care provided by breast care nurses. Contact and care ranged from little or none to comprehensive and ongoing. A key system-level challenge was that the diversity of diagnostic and treatment pathways for metastatic breast cancer meant that no systematic means existed to support routine or regular contact between breast care nurses and participants. Participants who did report having access to a specialised metastatic breast care nurse placed considerable value on the care received. For these participants, care from the breast care nurse extended and complemented care from the oncologist and included much needed psychosocial and practical support. For these participants, the breast care nurse assumed the role of key contact and care coordinator and was valued for their availability, accessibility and responsiveness. High levels of trust developed between patient and breast care nurse. CONCLUSIONS: Findings indicate that there may be gaps and inequities in supportive care in Australia for people diagnosed with metastatic breast cancer, a finding that supports earlier reports of limited access to breast care nurses for people with metastatic breast cancer in Australia. The specialised metastatic breast care nurse could potentially play a key role in addressing the high level of unmet supportive care needs and improve continuity of care for these patients.

Coping with COVID-19: The sociomaterial dimensions of living with pre-existing mental illness during the early stages of the coronavirus crisis.

In this article, we use the case study method to detail the experiences of five participants who reported living with pre-existing mental illness during COVID-19. We adopted a sociomaterial analytical approach, seeking to identify how human and nonhuman agents came together to generate states of wellbeing or distress during this challenging period. As the case studies show, feelings of anxiety, fear and risk were generated from the following sociomaterial conditions: loss of face-to-face contact with friends and family members; concerns about hygiene and infecting others; financial stress; loss of regular paid employment or volunteering work; public spaces; and the behaviour of unknown others in public spaces. The agents and practices that emerged as most important for opening capacities for coping and maintaining wellness during lockdown included: the space of the home; contact with a small number of intimate others; online therapeutic care; practising self-care skills learnt from previous difficult times; helping and supporting others; engaging in leisure activities; and the companionship of pets. Contributing to an affirmative approach to more-than-human assemblages of health, distress and recovery, these findings demonstrate what bodies can do in times of crisis and the agents and practices that can generate capacities for coping.

A time for self-care? Frontline health workers' strategies for managing mental health during the COVID-19 pandemic.

Frontline healthcare workers have experienced detrimental mental health impacts during the COVID-19 pandemic including anxiety, emotional distress, stress, fatigue, and burnout. But little is known about how these healthcare professionals take care of their own mental health in the midst of considerable personal, occupational and social disruption. In this article, we use qualitative data from an Australian national survey to examine the self-care strategies frontline healthcare professionals employed to manage their mental health and wellbeing during the crisis. Findings reveal how healthcare workers sought to adjust to disruption by adopting new self-care practices and mindsets, while encountering numerous personal and professional struggles that undermined their capacity for self-care. Feeling socially connected and valued were critical dimensions of caring for self, illustrating the importance of locating self-care in the social domain. These findings, we argue, highlight the need to expand conceptions of self-care away from those that focus primarily on the individual towards approaches that situate self care as collective and relational.

Sociomaterialities of health, risk and care during COVID-19: Experiences of Australians living with a medical condition.

People living with pre-existing illnesses were identified as one of the groups most at risk when COVID-19 erupted. In this article, using the method of case studies developed from interviews, we explore how Australians in this category considered their risk and responded to it as they were learning about COVID-19 and living with restrictions and lockdown conditions in the early months of the pandemic. Building on the literature on assemblages of health and illness, therapeutic landscapes and the materialities of care, our analysis considers sociomaterialities of health, risk and care described in six featured case studies. Each person recounted a unique narrative that described the coming together of several different human and nonhuman agents in their experiences. Yet a number of overarching and intersecting themes can also be traced across the participants' narratives: the vital contributions of lay care and self-care as part of the materialities of care, health and wellbeing; the role played by social networks, both online and in-person, for people in learning about and coping with COVID-19 and its potential risks; previous embodied and affective experiences of illness, vulnerability and care; and the role played by place and space in generating either therapeutic or distressing affective atmospheres. These findings have implications for better understandings of the situated sociomaterial contexts of how embodied experience, affective forces and encounters and relationships with other people and with things, place and space come together in crises such as COVID-19.

First Nations Perspectives in Law-Making About Voluntary Assisted Dying.

Voluntary assisted dying laws have now been enacted in all six Australian States with reform being considered in the remaining two. While there is an emerging body of literature examining various aspects of regulation, there has been scant consideration of what these reforms mean for First Nations peoples, and to what extent their experiences have been considered in the process of developing legislation. This article provides a critical analysis of how Indigenous perspectives both contributed to, and were engaged with, during the law reform processes in Victoria and Western Australia, the first two States to grapple with this topic. Findings reveal the sophistication in how Indigenous organisations and individuals engaged with this issue and highlight the critical importance of not universalising Indigenous perspectives. Significantly, there was much greater engagement with Indigenous views in Western Australia than in Victoria. We conclude by considering how Indigenous voices can meaningfully influence Australian law reform processes.

Hopeful dying? The meanings and practice of hope in palliative care family meetings.

Hope can carry considerable allure for people facing imminent mortality and for those who care for them. Yet, how hope is variously and relationally (re)produced within end-of-life care settings, remains under-researched. In this study, we aimed to better understand hope as it circulates within palliative care, drawing on video recorded family meetings and pre- and post-meeting qualitative interviews, within two hospitals in Queensland, Australia. Our findings highlight family meetings as an important site for articulations of hope and hopefulness. The results illustrate how hope is recalibrated within the transition to and through palliative care, the tensions between hope and futility, and the work of hope in discussions of goals and expectations. Through our analysis we argue that hopefulness within family meetings, and in palliative care more broadly, is collectively produced and opens up discourses of hope to the lived experience of terminality. Attending to the nuances of hope, including moving beyond the determinative (hope for more life/hope for a quick death), can elucidate the possibilities and problems of the collective negotiation of hope at the end of life, including how hope can be drawn on to express support and solidarity.

"Covid Just Amplified the Cracks of the System": Working as a Frontline Health Worker during the COVID-19 Pandemic.

The COVID-19 pandemic has intensified existing workplace stresses and created new challenges for people working on the healthcare frontline, including rapid workplace changes and increasing uncertainty at work, along with fear of contracting the virus. The purpose of this study is to examine the workplace challenges described by Australian frontline health workers during the pandemic. Drawing on a national online anonymous survey of 9518 healthcare workers, we analysed free-text responses to the question: "What did you find to be the main challenges that you faced during the pandemic?" A qualitative content analysis was undertaken. We identified five key themes relating to participant experiences of workplace challenges. These were: Work-life imbalance; Following orders or caring for patients; Unpredictability, disruption, and inconsistency at work; The right to be safe at work; and (Un)preparedness in the workplace. We argue that working during the COVID-19 pandemic illuminated existing occupational health and safety issues that have serious implications for job satisfaction, health workforce retention, and ultimately, patient care.

The social meanings of choice in living-with advanced breast cancer.

Individual choice is valorised as a core social value; yet the necessity and desirability of making choices takes on new significance for people living with incurable cancer who are required to make often difficult decisions about treatment, care and family life, amidst considerable vulnerability and precariousness. There has been comparatively little exploration of how choice is negotiated and made meaningful under the spectre of incurability and a contracted future. In this paper, drawing on multiple qualitative interviews with 38 women with metastatic breast cancer, we explore how they experience and give meaning to choice in relation to their health (and beyond) in their daily lives. Our analysis highlights that while exercising choice was sometimes a concealed or silent pursuit, choice was always a socially negotiated and temporally unfolding process, nested within relational and interpersonal dynamics. Choices were also often constrained, even foreclosed, due to situational and relational dynamics. Yet even in the absence of choice, the idea of choice-as-control was discursively embraced by women. We argue that greater attention is needed to the affective, temporal and economic dimensions of choice, and how treatment decisions are asymmetrically structured when considered within the normative context of cancer.

Learning about COVID-19: a qualitative interview study of Australians' use of information sources.

BACKGROUND: A multitude of information sources are available to publics when novel infectious diseases first emerge. In this paper, we adopt a qualitative approach to investigate how Australians learnt about the novel coronavirus and COVID-19 and what sources of information they had found most useful and valuable during the early months of the pandemic. METHODS: In-depth semi-structured telephone interviews were conducted with a diverse group of 40 Australian adults in mid-2020 about their experiences of the COVID-19 crisis. Participants were recruited through Facebook advertising. Detailed case studies were created for each participant, providing the basis of a thematic analysis which focused on the participants' responses to the questions about COVID-19-related information sources. RESULTS: Diverse sources of COVID-19-related information, including traditional media, online media and in-person interactions, were actively accessed, appraised and engaged with by participants. There was a high level of interest in COVID-19 information as people grappled with uncertainty, anxiety and feeling overwhelmed. Certain key events or experiences made people become aware that the outbreak was threatening Australia and potentially themselves. Most people demonstrated keen awareness that misinformation was rife in news outlets and social media sites and that they were taking steps to determine the accuracy of information. High trust was placed in health experts, scientists and government sources to provide reliable information. Also important to participants were informal discussions with friends and family members who were experts or working in relevant fields, as well as engaging in-person in interactions and hearing from friends and family who lived overseas about what COVID-19 conditions were like there. CONCLUSION: A constantly changing news environment raises challenges for effective communication of risk and containment advice. People can become confused, distressed and overwhelmed by the plethora of information sources and fast-changing news environment. On the other hand, seeking out information can provide reassurance and comfort in response to anxiety and uncertainty. Clarity and consistency in risk messaging is important, as is responding quickly to changes in information and misinformation. Further research should seek to identify any changes in use of and trust in information sources as time goes by.

The agentic Self and uncontrollable body: Young people's management of chronic illness at university.

Young people's experiences of living with a long-term health condition have been largely investigated from the perspective of developing autonomy and optimal self-management of treatment regimens. Little existing research explores how young people adjust to the experience of chronic illness within everyday social contexts. Drawing on sociocultural theories of healthism, in this article, we examine the everyday strategies students employed to manage their health condition at university. Data were drawn from a qualitative study with 16 undergraduate students in Australia. Findings from interviews highlight how participants took up discourses of the (hard-working, diligent) Self to discursively position themselves as 'health conscious' and 'in control'. This positioning was maintained through separating the controlled Self from the (uncontrollable) body. The unpredictability of the body posed a threat to young people's abilities to maintain control and denied them opportunities to exercise personal agency. Yet, participants also described a number of subversive strategies in order to take back control and resist the experience of ill health. These potential agentic practices often held unintended consequences, including loss of optimal medical control or (self) exclusion from university life - offering new insights into the differing ways young people concomitantly take-up, rework and resist the pursuit of healthism to 'successfully' manage their health conditions.

Between knowing and doing person-centredness: A qualitative examination of health professionals' perceptions of roles in self-management support.

Self-management is a contemporary model of chronic condition care that places expectations on, and roles for, both patients and health professionals. Health professionals are expected to form partnerships with their patients, and patients are expected to be active participants in their own care. In these new roles, control and responsibility for self-management are shared between people with chronic conditions and their health professionals. We still have limited knowledge about how these new roles are enacted in self-management support. In this article, we examine how health professionals perceive the roles of patients and professionals in chronic condition self-management, drawing on Bourdieu's concepts of field, doxa and capital. In this qualitative study, 32 in-depth interviews were conducted with 11 health professionals in Sydney, Australia. Data were analysed thematically. Three themes were derived. First, there was incongruence between how participants characterised and enacted their roles. Second, participants compartmentalised clinical and non-clinical aspects of self-management support. Finally, the roles of health professionals entwined with emotions and judgements of patienthood revealed that the provision of self-management support was linked to a fit between individuals' cultural health capital and the expectations governing the field. We argue that 'taken for granted' assumptions about self-management and self-management support must be challenged to mitigate negative social representations and unrealistic expectations placed on patients and health professionals, particularly those patients with less capital, who are more marginalised within clinical interactions.