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.

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.

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.

Are we informing our patients correctly? Evaluation of perioperative counselling for paediatric intestinal stoma formation: a national study.

PURPOSE: Adequate preoperative information is known to improve patient outcomes. We aimed to evaluate perioperative education for paediatric patients and families undergoing intestinal stoma formation. METHODS: UK paediatric surgery centres were invited to recruit patients aged 6-16 years with a stoma in situ or reversed within the last 2 years. Patient and parent questionnaires were posted for potential participants. RESULTS: Eighty-three patient/parent dyads returned questionnaires. Median age was 11.5 years (range 4.1-17.8), with 48% (n = 40) formed electively. Parents rated how well-informed they felt perioperatively out of 10 (0 poorly, 10 highly informed). Parents were better informed about surgical issues and stoma care than psychological and social impacts (7.45 vs 6.11; p < 0.0001). 54% reported surgical complications but significantly fewer patients listed these amongst the worst things about having a stoma (24.4%) when compared with psychosocial issues: distress from bag leaks (90.8%; p < 0.0001), self-consciousness (54.1%; p = 0.0001), and restricted activity (40.2%; p = 0.03). CONCLUSION: Parents felt well-informed for medical and practical aspects but less well-informed of psychological and lifestyle impacts of having a stoma. Surgical complications were less important to patients than the impact on daily life. Increased psychosocial information would enable families to be better prepared for life with a stoma.

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.

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.

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.

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.

Responses to a cancer diagnosis: a qualitative patient-centred interview study.

PURPOSE: A cancer diagnosis is an emotive and challenging time for patients. This study aimed to systematically explore patients' accounts of experiencing their cancer diagnosis. The purpose of this article is to offer a typology of patient responses to receiving a cancer diagnosis as a means through which to affirm the range of patients' experiences and to guide clinicians' practice. METHODS: Qualitative semi-structured interviews were conducted between 2015 and 2017 with 80 patients living with cancer: 34 females and 46 males, aged between 31 and 85, diagnosed with a range of cancer types, stages and treatment trajectories, from two metropolitan hospitals on the east coast of Australia. Interview data were analysed thematically, using the framework approach. RESULTS: A typology of responses to the cancer diagnosis was derived from the analysis and included (1) the incongruent diagnosis, unexpected because it did not 'fit' with the patient's 'healthy' identity; (2) the incidental diagnosis, arising from seemingly unrelated or minor medical investigations; (3) the validating diagnosis, as explanation and confirmation of previously unexplained symptoms, pain or feelings; (4) the life context diagnosis, where the cancer diagnosis was positioned relative to other challenging life events, or as relatively inconsequential compared with the hardship of others. CONCLUSIONS: A diagnosis of cancer is not always (or only) experienced by patients with shock and despair. Diagnosis is perceived and experienced in diverse ways, shaped by broader social or life contexts, and with important implications for the clinical encounter and communication from an oncology perspective.

The (Co)Production of Difference in the Care of Patients With Cancer From Migrant Backgrounds.

An extensive body of scholarship focuses on cultural diversity in health care, and this has resulted in a plethora of strategies to "manage" cultural difference. This work has often been patient-oriented (i.e., focused on the differences of the person being cared for), rather than relational in character. In this study, we aimed to explore how the difference was relational and coproduced in the accounts of cancer care professionals and patients with cancer who were from migrant backgrounds. Drawing on eight focus groups with 57 cancer care professionals and one-on-one interviews with 43 cancer patients from migrant backgrounds, we explore social relations, including intrusion and feelings of discomfort, moral logics of rights and obligation, and the practice of defaulting to difference. We argue, on the basis of these accounts, for the importance of approaching difference as relational and that this could lead to a more reflexive means for overcoming "differences" in therapeutic settings.

Using HIV Surveillance Laboratory Data to Identify Out-of-Care Patients.

HIV-associated laboratory tests reported to public health surveillance have been used as a proxy measure of care engagement of HIV+ individuals. As part of a Health Resources and Services Administration (HRSA) Special Projects of National Significance (SPNS) Initiative, the Massachusetts Department of Public Health (MDPH) worked with three pilot clinical facilities to identify HIV+ patients whose last HIV laboratory test occurred at the participating facility but who then appeared to be out of care, defined as an absence of HIV laboratory test results reported to MDPH for at least 6 months. The clinical facilities then reviewed medical records to determine whether these patients were actually not in care, or if there was another reason that they did not have a laboratory test performed, and provided feedback to MDPH on each of the presumed out-of-care patients. In the first year of the pilot project, 37% of patients who appeared to be out of care based on laboratory data were confirmed to be out of care after review of clinical health records. Of those patients who were confirmed to be out of care, 55% had a subsequent laboratory test within 3 months, and 72% had a laboratory test within 6 months, indicating that they had re-engaged with a care provider. MDPH found that it was essential to have clinical staff confirm the care status of patients who were presumed to be out of care based on surveillance data.

Correction to: Changes in relative fit of human heat stress indices to cardiovascular, respiratory, and renal hospitalizations across five Australian urban populations.

The authors of the article would like to bring the following correction/corrigendum to attention: When recently investigating future changes in heat stress indices, we discovered an error in the use of the heatwave indices we compared in Goldie et al. (2017).

Controlled, Constrained, or Flexible? How Self-Management Goals Are Shaped By Patient-Provider Interactions.

A person-centered approach to goal-setting, involving collaboration between patients and health professionals, is advocated in policy to support self-management. However, this is difficult to achieve in practice, reducing the potential effectiveness of self-management support. Drawing on observations of consultations between patients and health professionals, we examined how goal-setting is shaped in patient-provider interactions. Analysis revealed three distinct interactional styles. In controlled interactions, health professionals determine patients' goals based on biomedical reference points and present these goals as something patients should do. In constrained interactions, patients are invited to present goals, yet health professionals' language and questions orientate goals toward biomedical issues. In flexible interactions, patients and professionals both contribute to goal-setting, as health professionals use less directive language, create openings, and allow patients to decide on their goals. Findings suggest that interactional style of health professionals could be the focus of interventions when aiming to increase the effectiveness of goal-setting.

Changes in relative fit of human heat stress indices to cardiovascular, respiratory, and renal hospitalizations across five Australian urban populations.

Various human heat stress indices have been developed to relate atmospheric measures of extreme heat to human health impacts, but the usefulness of different indices across various health impacts and in different populations is poorly understood. This paper determines which heat stress indices best fit hospital admissions for sets of cardiovascular, respiratory, and renal diseases across five Australian cities. We hypothesized that the best indices would be largely dependent on location. We fit parent models to these counts in the summers (November-March) between 2001 and 2013 using negative binomial regression. We then added 15 heat stress indices to these models, ranking their goodness of fit using the Akaike information criterion. Admissions for each health outcome were nearly always higher in hot or humid conditions. Contrary to our hypothesis that location would determine the best-fitting heat stress index, we found that the best indices were related largely by health outcome of interest, rather than location as hypothesized. In particular, heatwave and temperature indices had the best fit to cardiovascular admissions, humidity indices had the best fit to respiratory admissions, and combined heat-humidity indices had the best fit to renal admissions. With a few exceptions, the results were similar across all five cities. The best-fitting heat stress indices appear to be useful across several Australian cities with differing climates, but they may have varying usefulness depending on the outcome of interest. These findings suggest that future research on heat and health impacts, and in particular hospital demand modeling, could better reflect reality if it avoided "all-cause" health outcomes and used heat stress indices appropriate to specific diseases and disease groups.

Living Well? Strategies Used by Women Living With Metastatic Breast Cancer.

Metastatic breast cancer is a disease of changing status-once an imminent death sentence, now a chronic (albeit incurable) disease. Medical intervention advances mean women with metastatic breast cancer now have symptoms alleviated and, potentially, life extended. Living with this disease, however, requires more than a medical approach to symptoms. We were interested to know whether women manage, and if so, how, to "live well" with metastatic cancer. We conducted interviews with 18 women. Women differed in the approaches they used. Most common was the attempt to reestablish a sense of normality in their lives. However, a second group reevaluated and reprioritized their lives; and a third group was restricted in their capacity to live well because of symptoms. The findings provide the foundation for future research exploring normalization of experiences of metastatic cancer, and other chronic illnesses, where people are living with knowledge that they have contracted time.

'You just change the channel if you don't like what you're going to hear': gamblers' attitudes towards, and interactions with, social marketing campaigns.

OBJECTIVES: To investigate how gamblers interact with, and respond to, downstream social marketing campaigns that focus on the risks and harms of problem gambling and/or encourage help seeking. METHODS: Qualitative study of 100 gamblers with a range of gambling behaviours (from non-problem to problem gambling). We used a Social Constructivist approach. Our constant comparative method of data interpretation focused on how participants' experiences and interactions with gambling influenced their opinions towards, and interactions with social marketing campaigns. RESULTS: Three key themes emerged from the narratives. (i) Participants felt that campaigns were heavily skewed towards encouraging individuals to take personal responsibility for their gambling behaviours or were targeted towards those with severe gambling problems. (ii) Participants described the difficulty for campaigns to achieve 'cut through' because of the overwhelming volume of positive messages about the benefits of gambling that were given by the gambling industry. (iii) Some participants described that dominant discourses about personal responsibility prevented them from seeking help and reinforced perceptions of stigma. CONCLUSIONS AND IMPLICATIONS: Social marketing campaigns have an important role to play in the prevention of gambling risk behaviours and the promotion of help seeking. Social marketers should explore how to more effectively target campaigns to different audience segments, understand the role of environmental factors in undermining the uptake of social marketing strategies and anticipate the potential unforeseen consequences of social marketing strategies.

The experience of living with metastatic breast cancer--a review of the literature.

Women's experiences with metastatic breast cancer have received little research attention. We reviewed published articles (1984-2013) reporting research examining women's experiences of metastatic breast cancer (n = 33). Findings from quantitative studies were categorized into three broad areas: adverse consequences, satisfaction with health care providers, and strategies for living. Themes identified from qualitative findings include living as a social outsider; importance of hope; health and quality of life; positive experiences; experiences at end of life; and strategies for living. More research is needed to explore experiences of subgroups to appropriately respond to women's diverse care needs.

Finding my tribe: a qualitative interview study of how people living with metastatic breast cancer perceive support groups.

PURPOSE: This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC. METHODS: Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis. RESULTS: Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks. CONCLUSIONS: MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC. IMPLICATIONS FOR CANCER SURVIVORS: MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs.

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.