'What price do you put on your health?': Medical cannabis, financial toxicity and patient perspectives on medication access in advanced cancer.

INTRODUCTION: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. METHODS: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision-making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. RESULTS: Overall, participants supported making MC legally accessible as a prescription-only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict-if found effective-that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. CONCLUSIONS: These findings suggest that-despite a relatively robust universal healthcare system-Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears-and the systems sustaining them-may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision-making, perceptions and experiences.

Quality of life beyond measure: Advanced cancer patients, wellbeing and medicinal cannabis.

Experiences of advanced cancer are assembled and (re)positioned with reference to illness, symptoms and maintaining 'wellbeing'. Medical cannabis is situated at a borderline in this and the broader social domain: between stigmatised and normalised; recreational and pharmaceutical; between perception, experience, discourse and scientific proof of benefit. Yet, in the hyper-medicalised context of randomised clinical trials (RCTs), cancer, wellbeing and medical cannabis are narrowly assessed using individualistic numerical scores. This article attends to patients' perceptions and experiences at this borderline, presenting novel findings from a sociological sub-study embedded within RCTs focused on the use of medical cannabis for symptom relief in advanced cancer. Through a Deleuzo-Guattarian-informed framework, we highlight the fragmentation and reassembling of bodies and propose body-situated experiences of wellbeing in the realm of advanced cancer. Problematising 'biopsychosocial' approaches that centre an individualised disconnected patient body in understandings of wellbeing, experiences of cancer and potential treatments, our findings foreground relational affect and embodied experience, and the role of desire in understanding what wellbeing is and can be. This also underpins and enables exploration of the affective reassembling ascribed to medical cannabis, with particular focus on how it is positioned within RCTs.

The VOTIS, part 2: Using a video-reflexive assessment activity to foster dispositional learning in interprofessional education.

Effective interprofessional collaborative practice (IPCP) requires a new way of working characterized by distributed leadership skills, shared decision-making, and the adoption of uniprofessional and interprofessional identities. Health professional educators are tasked with preparing clinicians for IPCP through interprofessional education (IPE). Numerous IPE teaching interventions have been developed, ranging in length from hours to semesters, designed to introduce students to interprofessional ways of working - usually evaluated in terms of student satisfaction, perceptions of other disciplines and conceptual knowledge. However, working interprofessionally also requires integrating dispositional knowledge into one's emerging interprofessional habits and values. In this paper, we describe a learning activity, inspired by a new video-reflexive methodology, designed to foster dispositional learning of interprofessional skills using a video-based assessment tool: the Video Observation Tool for Interprofessional Skills (VOTIS). Based on focus group and interview data, we suggest the activity's usefulness in fostering conceptual, procedural and dispositional knowledge, as well as reflexive feedback literacy. Overall, our qualitative evaluation of the VOTIS suggests the merits of drawing on video-reflexive methodology and pedagogical theory to re-imagine IPE as a dynamic process, requiring the development of interprofessional skills that must be appropriated into students' emerging (inter)professional identities.

Emotion as reflexive practice: A new discourse for feedback practice and research.

INTRODUCTION: Like medicine and health care, feedback is a practice imbued with emotions: saturated with feelings relevant to one's identity and status within a given context. Often this emotional dimension of feedback is cast as an impediment to be ignored or managed. Such a perspective can be detrimental to feedback practices as emotions are fundamentally entwined with learning. In this critical review, we ask: What are the discourses of emotion in the feedback literature and what 'work' do they do? METHODS: We conducted a critical literature review of emotion and feedback in the three top journals of the field: Academic Medicine, Medical Education and Advances in Health Sciences Education. Analysis was informed by a Foucauldian critical discourse approach and involved identifying discourses of emotion and interpreting how they shape feedback practices. FINDINGS: Of 32 papers, four overlapping discourses of emotion were identified. Emotion as physiological casts emotion as internal, biological, ever-present, immutable and often problematic. Emotion as skill positions emotion as internal, mainly cognitive and amenable to regulation. A discourse of emotion as reflexive practice infers a social and interpersonal understanding of emotions, whereas emotion as socio-cultural discourse extends the reflexive practice discourse seeing emotion as circulating within learning environments as a political force. DISCUSSION: Drawing on scholarship within the sociology of emotions, we suggest the merits of studying emotion as inevitable (not pathological), as potentially paralysing and motivating and as situated within (and often reinforcing) a hierarchical social health care landscape. For future feedback research, we suggest shifting towards recognising the discourse-theory-practice connection with emotion in health professional education drawing from reflexive and socio-cultural discourses of emotion.

Physiotherapists Both Reproduce and Resist Biomedical Dominance when Working With People With Low Back Pain: A Qualitative Study Towards New Praxis.

Despite recommendations to incorporate physical and psychosocial factors when providing care for people with back pain, research suggests that physiotherapists continue to focus on biological aspects. This study investigated how interpersonal and institutional norms influence this continued enactment of the biological aspects of management. We used theoretically-driven analysis, drawing from Foucauldian notions of power, to analyse 28 ethnographic observations of consultations and seven group discussions with physiotherapists. Analysis suggested that physiotherapy training established expectations of what a physiotherapist 'should' focus on, and institutional circumstances strongly drew the attention of physiotherapists towards biological aspects. Resistance to these forces was possible when, for example, physiotherapists reflected upon their practice, used silences and pauses during consultations, and actively collaborated with patients. These circumstances facilitated use of non-biomedical management approaches. Findings may assist physiotherapists to rework the enduring normative focus on biomedical aspects of care when providing care for patients with back pain.

Surprise Reveals the Affective-Moral Economies in Cancer Illness Narratives.

Emotions, like joy and sorrow, feature in illness narratives, dramatizing stories of becoming: sick, well, controlled, in control. However, brief emotions, such as surprise, have received limited analytic attention in cancer illness narratives. Drawing on 20 interviews with 11 participants with diverse cancer diagnoses, along with the 455 photographs they produced for this study, we address the complex interactions between discourse, societal expectations, and perceptions in moral-affective economies. Tracing the emergence, deployment, and silencing of surprise provided an avenue to explore connections between affect, morality, advocacy, and philanthropy. We show how surprise works to deny uncertainties couched in individual risk, and situate cancer causation within the logics of anticipation, (re)producing socio-cultural etiology narratives. Attending to surprise reveals how some cancers are situated as individual responsibilities, with restricted access to compassion and collective resources. Thus, we interrogate the affective-moral economy underpinning cancer illness narratives, and surprise's pivotal role in its analysis.

Elucidating knowledge and beliefs about obesity and eating disorders among key stakeholders: paving the way for an integrated approach to health promotion.

BACKGROUND: Understanding the knowledge and beliefs of key stakeholders is crucial in developing effective public health interventions. Knowledge and beliefs about obesity and eating disorders (EDs) have rarely been considered, despite increasing awareness of the need for integrated health promotion programs. We investigated key aspects of knowledge and beliefs about obesity and EDs among key stakeholders in Australia. METHODS: Using a semi-structured question guide, eight focus groups and seven individual interviews were conducted with 62 participants including health professionals, personal trainers, teachers and consumer group representatives. An inductive thematic approach was used for data analysis. RESULTS: The findings suggest that, relative to obesity, EDs are poorly understood among teachers, personal trainers, and certain health professionals. Areas of commonality and distinction between the two conditions were identified. Integrated health promotion efforts that focus on shared risk (e.g., low self-esteem, body dissatisfaction) and protective (e.g., healthy eating, regular exercise) factors were supported. Suggested target groups for such efforts included young children, adolescents and parents. CONCLUSIONS: The findings indicate areas where the EDs and obesity fields have common ground and can work together in developing integrated health promotion programs.

The good pain patient: a critical evaluation of patients' self-presentations in specialist pain clinics.

Established research supports collaborative patient-clinician communication as a means of improving pain management and decreasing opioid use by patients with chronic pain. However, much of this scholarship emphasises clinicians' capacities to shape and improve communication; limited research investigates patients' roles in this process. Drawing on 40 ethnographic observations of patient-clinician interactions, clinical spaces and case conferences within one specialist pain clinic in Brisbane, Australia, this paper investigates how and why patients present themselves in particular ways within consultations. Our theoretical lens combines concepts from Goffman on patienthood and stigma with Foucauldian theories of pastoral and disciplinary power. Findings suggest that elements of the clinical environment - namely posters - usher patients towards presenting in what we conceptualise as the 'good pain patient' role. In this role, patients demonstrate that they are moral, responsible, and contributing members of society. Yet, such a role is problematic to opening communication, with the role constraining what is socially acceptable for patients with chronic pain to say, do, or feel. In recognising how clinical contexts facilitate problematic good pain patient presentations, this paper directs attention to the spatial and relational nature of implicit clinical expectations and constrained good pain patient presentations.

Fostering equitable change in health services: Using critical reflexivity to challenge dominant discourses in low back pain care in Australia.

OBJECTIVES: Justice and equity-focused practices in health services play a critical but overlooked role in low back pain (LBP) care. Critical reflexivity - the ability to examine and challenge power relations, and broader social issues embedded in everyday life - can be a useful tool to foster practices that are more socially just. No research has yet explored this approach in back pain health services. This study sought to understand how clinicians construct LBP in relation to broader socio-cultural-political aspects of care and explore if those constructions changed when clinicians engaged with critically reflexive dialogues with researchers. METHODS: Using critical discourse analysis methods, this qualitative study explored institutionalised patterns of knowledge in the construction of LBP care. We conducted 22 critically reflexive dialogues with 29 clinicians from two health services in Australia - a private physiotherapy clinic and a public multidisciplinary pain clinic. RESULTS: Our analyses suggested that clinicians and services often constructed LBP care at an individual level. This dominant individualistic discourse constrained consideration of justice-oriented practices in the care of people with LBP. Through dialogues, discursive constructions of LBP care expanded to incorporate systems and health service workplace practices. This expansion fostered more equitable clinical and service practices - such as assisting patients to navigate health care systems, considering patients' socioeconomic circumstances when developing treatment plans, encouraging staff discussion of possible systemic changes to enhance justice, and fostering a more inclusive workplace culture. Although such expansions faced challenges, incorporating broader discourses enabled recommendations to address LBP care inequities. CONCLUSIONS: Critical reflexivity can be a tool to foster greater social justice within health services. By expanding constructions of LBP care beyond individuals, critical reflexive dialogues can foster discussion and actions towards more equitable workplace cultures, services and systems.

'Engaging on a slightly more human level': A qualitative study exploring the care of individuals with back pain in a multidisciplinary pain clinic.

Chronic low back pain is characterised by multiple and overlapping biological, psychological, social and broader dimensions, affecting individuals' lives. Multidisciplinary pain services have been considered optimal settings to account for the multidimensionality of chronic low back pain but have largely focused on cognitive and behavioural aspects of individuals' pain. Social dimensions are usually underexplored, considered outside or beyond healthcare professionals' scope of practice. Employing Actor Network Theorist Mol's concept multiplicity, our aim in this paper is to explore how a pain service's practices bring to the fore the social dimensions of individuals living with low back pain. Drawing on 32 ethnographic observations and four group exchanges with the service's clinicians, findings suggest that practices produced multiple enactments of an individual with low back pain. Although individuals' social context was present and manifested during consultations at the pain service (first enactment: 'the person'), it was often disconnected from care and overlooked in 'treatment/management' (second enactment: 'the patient'). In contrast, certain practices at the pain service not only provided acknowledgement of, but actions towards enhancing, individuals' social contexts by adapting rules and habits, providing assistance outside the service and shifting power relations during consultations (third enactment: 'the patient-person'). We therefore argue that different practices enact different versions of an individual with low back pain in pain services, and that engagement with individuals' social contexts can be part of a service's agenda.

Navigating whiteness: affective relational intensities of non-clinical psychosocial support by and for culturally and linguistically diverse people.

Mental health is political, with intersecting economic, cultural, racialized, and affective dimensions making up the care assemblage, signalling how care is conceptualised and who is deserving of care. In this article, we examine emotions circulating in a non-clinical psychosocial support program for culturally and linguistically diverse people experiencing mental ill-health, foregrounding the relations between culture, race, economy, and assumptions underpinning understandings of care. The mental health program under study offers psychosocial support for culturally and linguistically diverse people to manage life challenges and mental ill-health exacerbated by navigating the complexities of Australia's health and social care systems. We draw on interviews with clients, staff, and providers of intersecting services, employing Ahmed's concept of affective economies and Savreemootoo's concept of navigating whiteness to examine the care assemblage within interview transcripts. We provide insight into affective intensities such as hate, anger, and indifference embedded in white Anglo-centric services, positioning culturally and linguistically diverse people on the margins of care. Non-clinical psychosocial support programs can counter such affective intensities by training and employing multicultural peer support workers-people with lived experience-prioritising relational and place-based approaches to care and supporting and providing clients with relevant skills to navigate an Anglo-centric care system. However, this support is filled with affective tensions: (com)passion, frustration and fatigue circulate and clash due to the scarcity of resources, further signalling what type of care (and with/for whom) is prioritised within Australian relations of care.

Imperatives of health or happiness: Narrative constructions of long-term smoking after undergoing lung screening.

Tobacco control policies reinforce a health imperative that positions citizens as duty-bound to manage their health by abstaining from or quitting smoking. Limited attention is paid to the repercussions - especially for lung screening - of anti-smoking rhetoric emphasising individual responsibility. Drawing on interviews with 27 long-term smokers involved in an international lung screening trial, this study analysed Australian smokers' narratives of smoking. By attending to stigma and the use of public health rhetoric within personal narratives, we show how narratives underscoring individual responsibility for quitting were layered with conflicting explanations of biological responsibility and normative expectations. Ironically, narratives of individual responsibility potentially undermine smoking cessation. In positioning smokers as responsible for their own healthy choices, such rhetoric also positions smokers as responsible for managing their emotional health, which some did through smoking. Thus, anti-smoking campaigns pit the neoliberal imperative of health against the happiness imperative. These findings have implications for the design and delivery of lung screening campaigns. They also support calls to move beyond health messaging emphasising individual choice, towards acknowledging the moral power of structures and public health campaigns to discipline citizens in unintended ways.

Distress in the care of people with chronic low back pain: insights from an ethnographic study.

Introduction: Distress is part of the experiences and care for people with chronic low back pain. However, distress is often pathologised and individualised; it is seen as a problem within the individual in pain and something to be downplayed, avoided, or fixed. To that end, we situate distress as a normal everyday relational experience circulating, affecting, moving in, through, and across bodies. Challenging practices that may amplify distress, we draw on the theorisation of affect as a relational assemblage to analyse physiotherapy clinical encounters in the care of people with chronic low back pain. Methods: Adopting a critical reflexive ethnographic approach, we analyse data from a qualitative project involving 15 ethnographic observations of patient-physiotherapist interactions and 6 collaborative dialogues between researchers and physiotherapists. We foreground conceptualisations of distress- and what they make (im)possible-to trace embodied assemblage formations and relationality when caring for people with chronic low back pain. Results: Our findings indicate that conceptualisation matters to the clinical entanglement, particularly how distress is recognised and navigated. Our study highlights how distress is both a lived experience and an affective relation-that both the physiotherapist and people with chronic low back pain experience distress and can be affected by and affect each other within clinical encounters. Discussion: Situated at the intersection of health sociology, sociology of emotions, and physiotherapy, our study offers a worked example of applying an affective assemblage theoretical framework to understanding emotionally imbued clinical interactions. Viewing physiotherapy care through an affective assemblage lens allows for recognising that life, pain, and distress are emerging, always in flux. Such an approach recognises that clinicians and patients experience distress; they are affected by and affect each other. It demands a more humanistic approach to care and helps move towards reconnecting the inseparable in clinical practice-emotion and reason, body and mind, carer and cared for.

Is cancer care dependant on informal carers?

Over the past half century, medical care has become less institutionalised, more autonomous, equitable and less costly. This has led to a shift from hospital-based delivery to community care. This paper examines the experiences of Canberra-based carers following this shift using interview data from a longitudinal qualitative study of 32 informal carers of a spouse with cancer. Cancer patients experienced poorly coordinated care. When carers observed the effects of errors and miscommunication on patients, they felt compelled to coordinate patient care. Interview data suggest that informal carers of cancer patients are relied upon to manage patient care at home and in hospitals, but are not supported in undertaking this responsibility. This implies that carers should be a far more central focus in cancer care reform strategies.

A critical review of the biopsychosocial model of low back pain care: time for a new approach?

PURPOSE: Low back pain (LBP) is the leading cause of disability worldwide. Clinical research advocates using the biopsychosocial model (BPS) to manage LBP, however there is still no clear consensus regarding the meaning of this model in physiotherapy and how best to apply it. The aim of this study was to investigate how physiotherapy LBP literature enacts the BPS model. MATERIAL AND METHODS: We conducted a critical review using discourse analysis of 66 articles retrieved from the PubMed and Web of Science databases. RESULTS: Analysis suggest that many texts conflated the BPS with the biomedical model [Discourse 1: Conflating the BPS with the biomedical model]. Psychological aspects were almost exclusively conceptualised as cognitive and behavioural [Discourse 2: Cognition, behaviour, yellow flags and rapport]. Social context was rarely mentioned [Discourse 3: Brief and occasional social underpinnings]; and other broader aspects of care such as culture and power dynamics received little attention within the texts [Discourse 4: Expanded aspects of care]. CONCLUSION: Results imply that multiple important factors such as interpersonal or institutional power relations, cultural considerations, ethical, and social aspects of health may not be incorporated into physiotherapy research and practice when working with people with LBP.IMPLICATIONS FOR REHABILITATIONWhen using the biopsychosocial model with patients with low back pain, researchers narrowly focus on biological and cognitive behavioural aspects of the model.Social and broader aspects such as cultural, interpersonal and institutional power dynamics, appear to be neglected by researchers when taking a biopsychosocial approach to the care of patients with low back pain.The biopsychosocial model may be inadequate to address complexities of people with low back pain, and a reworking of the model may be necessary.There is a lack of research conceptualising how physiotherapy applies the biopsychosocial model in research and practice.

Using a qualitative sub-study to inform the design and delivery of randomised controlled trials on medicinal cannabis for symptom relief in patients with advanced cancer.

BACKGROUND: Recruitment for randomised controlled trials in palliative care can be challenging; disease progression and terminal illness underpin high rates of attrition. Research into participant decision-making in medicinal cannabis randomised controlled trials (RCTs) is very limited. Nesting qualitative sub-studies within RCTs can identify further challenges to participation, informing revisions to study designs and recruitment practices. This paper reports on findings from a qualitative sub-study supporting RCTs of medicinal cannabis for symptom burden relief in patients with advanced cancer in one Australian city. METHODS: Semi-structured qualitative interviews were conducted with 48 patients with advanced cancer, eligible to participate in a medicinal cannabis RCT (n=28 who consented to participate in an RCT; n=20 who declined). An iterative and abductive approach to thematic analysis and data collection fostered exploration of barriers and enablers to participation. RESULTS: Key enablers included participants' enthusiasm and expectations of medicinal cannabis as beneficial (to themselves and future patients) for symptom management, especially after exhausting currently approved options, and a safer alternative to opioids. Some believed medicinal cannabis to have anti-cancer effects. Barriers to participation were the logistical challenges of participating (especially due to driving restrictions and fatigue), reluctance to interfere with an existing care plan, cost, and concerns about receiving the placebo and the uncertainty of the benefit. Some declined due to concerns about side-effects or a desire to continue accessing cannabis independent of the study. CONCLUSIONS: The findings support revisions to subsequent medicinal cannabis RCT study designs, namely, omitting a requirement that participants attend weekly hospital appointments. These findings highlight the value of embedding qualitative sub-studies into RCTs. While some challenges to RCT recruitment are universal, others are context (population, intervention, location) specific. A barrier to participation found in research conducted elsewhere-stigma-was not identified in the current study. Thus, findings have important implications for those undertaking RCTs in the rapidly developing context of medical cannabis.

Emotions and lung cancer screening: Prioritising a humanistic approach to care.

Low-dose computed tomography lung cancer screening has mortality benefits. Yet, uptake has been low. To inform strategies to better deliver and promote screening, in 2018, we interviewed 27 long-term smokers immediately following lung cancer screening in Australia, prior to receiving scan results. Existing lung screening studies employ the Health Belief Model. Reflecting growing acknowledgement of the centrality of emotions to screening uptake, we draw on psychological and sociological theories on emotions to thematically and abductively analyse the emotional dimensions of lung cancer screening, with implications for screening promotion and delivery. As smokers, interviewees described feeling stigmatised, with female participants internalising and male participants resisting stigma. Guilt and fear related to lung cancer were described as screening motivators. The screening itself elicited mild positive emotions. Notably, interviewees expressed gratitude for the care implicitly shown through lung screening to smokers. More than individual risk assessment, findings suggest lung screening campaigns should prioritise emotions. Peer workers have been found to increase cancer screening uptake in marginalised communities, however the risk to confidentiality-especially for female smokers-limits its feasibility in lung cancer screening. Instead, we suggest involving peer consultants in developing targeted screening strategies that foreground emotions. Furthermore, findings suggest prioritising humanistic care in lung screening delivery. Such an approach may be especially important for smokers from low socioeconomic backgrounds, who perceive lung cancer screening and smoking as sources of stigma and face a higher risk of dying from lung cancer and lower engagement with screening.

Emotionally reflexive labour in end-of-life communication.

Within palliative care, clear and open communication about death is encouraged. Euphemisms are discouraged as threats to promoting clear understanding of the prognosis; to opening communication about what a good death means to individual patients and families; and to fostering collaborative planning aimed at achieving this 'good death'. Principles of patient-centred and culturally competent care, however, which reflect trends of individualisation, plurality and multiculturalism that are characteristic of late modernity, encourage respect for and support of patients' and families' preferences. These may include wishes to avoid open communication, preferences for euphemisms, and definitions of a 'good death' that vary from the practitioner's, and within families. The aim of this study was to examine how physicians navigate these competing priorities. Analysis is based on interviews with 23 doctors, ranging in experience from medical students through to senior palliative care specialists, and eight recorded observations of palliative care multidisciplinary team meetings with 52 clinicians collected in 2017 at two hospitals in one Australian metropolitan area. Findings show that synonyms familiar to clinicians are often used to communicate prognoses in multidisciplinary meetings. In communication with patients and families, doctors rely on emotional and cultural cues to decipher the preferred terminology and response. Drawing on a late modern re-imagination of emotion management, we conceptualise the work performed in this context as emotionally reflexive labour. These findings suggest that blanket protocols for direct communication overlook the complexity of end-of-life communication in an era where a 'good death' is understood to be culturally relative.