Disruption, discontinuity and a licence to live: Responding to cancer diagnoses.

Although a diagnosis of a life-limiting cancer is likely to evoke emotions, such as fear, panic and anxiety, for some people it can also provide an opportunity to live life differently. This article is based on research undertaken in Aotearoa New Zealand on the topic of exceptional cancer trajectories. Eighty-one participants who had been identified as living with a cancer diagnosis longer than clinically expected were interviewed, along with 25 people identified by some of the participants as supporters in their journey. For some participants the diagnosis provided the opportunity to rethink their lives, to undertake lifestyle and consumption changes, to be culturally adventurous, to take up new skills, to quit work and to change relationships with others. The concepts of biographical disruption and posttraumatic growth are considered in relation to these accounts, and it is argued that the event of a cancer diagnosis can give license for people to breach social norms.

Embodied decisions unfolding over time: a meta-ethnography systematic review of people with cancer's reasons for delaying or declining end-of-life care.

BACKGROUND: Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care. METHODS: Six academic databases were systematically searched for qualitative literature published between 2007 and 2021. Two researchers independently reviewed and critically appraised the studies. Using meta-ethnographic methods of translation and synthesis, we set out to identify and develop a new overarching model of the reasons patients decline end-of-life care and the factors contributing to this decision. RESULTS: The search yielded 2060 articles, and nine articles were identified that met the review inclusion criteria. The included studies can be reconceptualised with the key concept of 'embodied decisions unfolding over time'. It emphasises the iterative, dynamic, situational, contextual and relational nature of decisions about end-of-life care that are grounded in people's physical experiences. The primary influences on how that decision unfolded for patients were (1) the communication they received about end-of-life care; (2) uncertainty around their prognosis, and (3) the evolving situations in which the patient and family found themselves. Our review identified contextual, person and medical factors that helped to shape the decision-making process. CONCLUSIONS: Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients' end-of-life care decision-making, in particular estimating how much time one has left and patients' embodied knowing about when the right time for end-of-life care is. The multiple and intersecting domains of health that inform decision-making, namely physical, mental, social, and existential/spiritual as well as emotions/affect need further exploration. The integration of palliative care across the cancer care trajectory and earlier introduction of end-of-life care highlight the importance of these findings for improving access whilst recognising that accessing end-of-life care will not be desired by all patients.

"It's Just [Complicated] Sleep": Discourses of Sleep and Aging in the Media.

The media are influential in shaping beliefs and attitudes on aging and health-related behaviors. Sleep is increasingly recognized as a key pillar for healthy aging. However, the role of media representations of sleep is yet to be assessed with regard to discourses of aging. Texts from New Zealand's main free online news source were collated using key words "sleep" together with "aging," "older," "elderly," or "dementia" between 2018 and 2021. Contents of 38 articles were interpreted using critical discourse analysis. Discursive constructions described an inevitable decline of sleep with aging, including impacts of both physiological decline and life stage transitions; sleep's role as both a remedy and risk for ill health and disease; and the simplification of solutions for self-managing sleep juxtaposed alongside recognition of its complexity. The audience of these complex messages is left in the invidious position of both pursuing sleep practices to prevent age-related decline, whilst also being told that sleep degradation is inevitable. This research demonstrates the complexity of media messaging and the fraught options it offers: good sleep as both a reasonable achievement to strive for and as impossibly idealistic. Findings mirror two predominant health identities available to older people, as responsible for resisting aging or as falling into inevitable decline. This reveals additional expectations around appropriate time use and behaviors with aging. More nuanced messaging that goes beyond sleep as a resource for health and waking productivity is recommended. Acknowledging the complexity of sleep, aging, and society could be the starting point of such adaptation.

Routes into the homeopathic profession: Witnessing, gender and subaltern therapeutics.

Homeopathy, along with many other alternative therapies, has come under severe attack from apologists for orthodox medicine. Given the cultural authority of medicine, what then provides the impetus for people to take up homeopathy as a clinical practice? This article addresses this question in the context of homeopathic practice in New Zealand. Five focus groups were conducted with 22 homeopaths in five cities. The study found that it was common to be drawn to homeopathy through witnessing in themselves, their family, friends or animals, the positive effects of homeopathy, commonly after negligible success from conventional medicine. For many participants, all of whom were women, the opportunity to study homeopathy occurred when they were the primary carers of children, with homeopathy providing a possibility for a change in work trajectories. Many participants had previous occupations inside the conventional health system. Central to the appeal of homeopathy as a subaltern practice in New Zealand is the often dramatic impact of witnessing the effects of the therapeutic modality, which is conceptualised as analogous to an 'event' that tears at the fabric of the everyday.

Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies.

Advances in molecular technologies have the potential to help remedy health inequities through earlier detection and prevention; if, however, their delivery and uptake (and therefore any benefits associated with such testing) are not more carefully considered, there is a very real risk that existing inequities in access and use will be further exacerbated. We argue this risk relates to the way that information and knowledge about the technology is both acquired and shared, or not, between health practitioners and their patients.A healthcare system can be viewed as a complex social network comprising individuals with different worldviews, hierarchies, professional cultures and subcultures and personal beliefs, both for those giving and receiving care. When healthcare practitioners are not perceived as knowledge equals, they would experience informational prejudices, and the result is that knowledge dissemination across and between them would be impeded. The uptake and delivery of a new technology may be inequitable as a result. Patients would also experience informational prejudice when they are viewed as not being able to understand the information that is presented to them, and information may be withheld.Informational prejudices driven by social relations and structures have thus far been underexplored in considering (in)equitable implementation and uptake of new molecular technologies. Every healthcare interaction represents an opportunity for experiencing informational prejudice, and with it the risk of being inappropriately informed for undertaking (or offering) such screening or testing. Making knowledge acquisition and information dissemination, and experiences of informational prejudice, explicit through sociologically framed investigations would extend our understandings of (in)equity, and offer ways to affect network relationships and structures that support equity in delivery and uptake.

The handover room: a qualitative enquiry into the experience of morning clinical handover for acute medical teams.

BACKGROUND: Effective clinical handover has always been integral to delivering safe, high-quality care in medical wards. AIM: As handover activity increases in importance we wanted to explore the experience of physicians and trainee doctors. There is little research on internal medicine handover with even less based on direct observational research. METHODS: Data collection over 4 months by two general medicine physicians included participant observation of 37 meetings and 52 audio-recorded individual interviews. Inductive thematic analysis of the transcribed interviews proceeded iteratively in parallel with data collection. RESULTS: There was an excellent response rate from 27 of 28 invited trainees and 25 of 26 invited physicians. Overall the experience was positive. Acute medicine handover is a complex human endeavour, occurring daily with an unpredictable workload and areas of tension. Themes were grouped as structural (leadership role, start time, sequence, checklist, handbacks and efficiency) and relational (sensitivity, collegiality, acknowledgement, performance anxiety, tension, responsibility and leadership style). The physician leader needs to be skilled to follow the agreed and evolving process as well as being prepared, authoritative, flexible, equitable, aware and sensitive to the needs of senior colleagues and trainees. There was a tension between efficiency and teaching opportunities. CONCLUSION: This paper adds to a contextually sensitive understanding of the social dynamics of handover in acute medicine. Addressing the structural aspects is important to provide the necessary consistency and efficiency in what is an extremely complex and time-sensitive environment. As we continue to work on the evolution of the handover process in acute internal medicine, we must also attend to the relational aspects which are dynamic and central to its sustainability.

A Longitudinal Study of Interactions Between Health Professionals and People With Newly Diagnosed Diabetes.

PURPOSE: We undertook a study to observe in detail the primary care interactions and communications of patients with newly diagnosed diabetes over time. In addition, we sought to identify key points in the process where miscommunication might occur. METHODS: All health interactions of 32 patients with newly diagnosed type 2 diabetes were recorded and tracked as they moved through the New Zealand health care system for a period of approximately 6 months. Data included video recordings of patient interactions with the health professionals involved in their care (eg, general practitioners, nurses, dietitians). We analyzed data with ethnography and interaction analysis. RESULTS: Challenges to effective communication in diabetes care were identified. Although clinicians showed high levels of technical knowledge and general communication skill, initial consultations were often driven by biomedical explanations out of context from patient experience. There was a perception of time pressure, but considerable time was spent with patients by health professionals repeating information that may not be relevant to patient need. Health professionals had little knowledge of what disciplines other than their own do and how their contributions to patient care may differ. CONCLUSIONS: Despite current high skill levels of primary care professionals, opportunities exist to increase the effectiveness of communication and consultation in diabetes care. The various health professionals involved in patient care should agree on the length and focus of each consultation.

Patient resistance as a resource: candidate obstacles in diabetes consultations.

This study uses conversation analysis to explore 'candidate obstacles', a practice observed in sequences of patient resistance to lifestyle advice within health professional consultations. This article presents illustrative analyses of selected data excerpts drawn from audio-visual recordings of 116 tracked consultations between health professionals and 34 patients newly diagnosed with type 2 diabetes mellitus in New Zealand. The analysis shows that in consultations where health promotion activities are central, patient resistance can provide space for patients to identify obstacles to their compliance with lifestyle advice. Identifying candidate obstacles provides opportunities for health professionals to align advice with concerns of patients and potentially improve patient outcomes.

Dissonant roles: The experience of Maori in cancer care.

Indigenous peoples have poorer health outcomes than their non-indigenous counterparts and this applies to cancer outcomes for Maori in Aotearoa/New Zealand. Differential access to and quality of healthcare contributes to poorer survival rates for Maori. This research provides insight into some of the mechanisms that hinder and facilitate care access. Thirty four people who had undergone cancer treatment (19 Maori and 15 non-Maori) were interviewed by two Maori researchers. The analysis of the interview transcripts was informed by membership categorization analysis. This form of analysis attends to the categories that are used and the activities and characteristics associated with those categories. From this analysis it is argued that the classical patient role, or sick role, inadequately captures the kind of role that some Maori take in relation to their healthcare. Maori can also have culturally specific family (whanau) influences and a greater draw towards alternative approaches to healthcare. Dissonant roles contribute to a different experience for Maori. A better understanding of the categories and roles that are relevant to those who have cancer provides opportunities to attenuate the monocultural impacts of healthcare.

Cancer care decision making in multidisciplinary meetings.

Little research has been undertaken on the actual decision-making processes in cancer care multidisciplinary meetings (MDMs). This article was based on a qualitative observational study of two regional cancer treatment centers in New Zealand. We audiorecorded 10 meetings in which 106 patient cases were discussed. Members of the meetings categorized cases in varying ways, drew on a range of sources of authority, expressed different value positions, and utilized a variety of strategies to justify their actions. An important dimension of authority was encountered authority-the authority a clinician has because of meeting the patient. The MDM chairperson can play an important role in making explicit the sources of authority being drawn on and the value positions of members to provide more clarity to the decision-making process. Attending to issues of process, authority, and values in MDMs has the potential to improve cancer care decision making and ultimately, health outcomes.

Moral discourses and pharmaceuticalised governance in households.

This article extends our understanding of the everyday practices of pharmaceuticalisation through an examination of moral concerns over medication practices in the household. Moral concerns of responsibility and discipline in relation to pharmaceutical consumption have been identified, such as passive or active medication practices, and adherence to orthodox or unorthodox accounts. This paper further delineates dimensions of the moral evaluations of pharmaceuticals. In 2010 and 2011 data were collected from 55 households across New Zealand and data collection techniques, such as photo- and diary-elicitation interviews, allowed the participants to develop and articulate reflective stories of the moral meaning of pharmaceuticals. Four repertoires were identified: a disordering society repertoire where pharmaceuticals evoke a society in an unnatural state; a disordering self repertoire where pharmaceuticals signify a moral failing of the individual; a disordering substances repertoire where pharmaceuticals signify a threat to one's physical or mental equilibrium; a re-ordering substances repertoire where pharmaceuticals signify the restoration of function. The research demonstrated that the dichotomies of orthodox/unorthodox and compliance/resistance do not adequately capture how medications are used and understood in everyday practice. Attitudes change according to why pharmaceuticals are taken and who is taking them, their impacts on social relationships, and different views on the social or natural production of disease, the power of the pharmaceutical industry, and the role of health experts. Pharmaceuticals are tied to our identity, what we want to show of ourselves, and what sort of world we see ourselves living in. The ordering and disordering understandings of pharmaceuticals intersect with forms of pharmaceuticalised governance, where conduct is governed through pharmaceutical routines, and where self-responsibility entails following the prescription of other agents. Pharmaceuticals symbolise forms of governance with different sets of roles and responsibilities.

Limits to neoliberal reforms in the health sector: the case of pharmaceutical management in New Zealand.

In New Zealand in 1993, a pharmaceutical management agency (PHARMAC) was established during the height of neoliberal reforms in the health sector. The agency's relationship with pharmaceutical companies, patient lobby groups, and health professionals has been hostile at times, but despite this hostility, PHARMAC has remained substantially independent from political interference. This article draws on critical theory and Durkheimian perspectives to explain how such a strong regulatory organization was established during a time when attempts were made to reshape the health sector to conform to a neoliberal agenda. An analysis of historical and contemporary issues demonstrates the contradictory position of the state in relation to the regulation and subsidization of pharmaceuticals, with conflicting demands to retain popular support, restrain state expenditure, and respond to expectations to provide pharmaceuticals to its citizens. This article demonstrates how the establishment of PHARMAC reconciles these contradictory demands, arguing that it removes decision making from political control and has been able to sustain its place by appealing to objective assessment criteria. This case signals limits of the neoliberal agenda.

Framing the consultation: the role of the referral in surgeon-patient consultations.

This study describes and analyzes the impact of the referral process on communication at the beginning of surgeon-patient consultations. We used conversation analysis to analyze the opening interactional activities of surgeon-patient consultations in New Zealand. This study focuses on 20 video-recorded consultations recorded between 2004 and 2006. Participants in surgeon-patient consultations began referred consultations by discussing the referral letter in what we have termed "referral recognition sequences." These sequences are coconstructed activities that can be implicit or explicit and address the minimized epistemic distance between surgeons and patients that is caused by the referral process. These sequences can be simple or complex, and this complexity may be determined by the quality of the referral letter received. Acknowledgment of the referral letter assists in achieving alignment between surgeon, patient, and referring doctor regarding the presenting problem. If this alignment is not achieved, progressivity of the consultation is affected, as there is disagreement as to why the patient is seeing the surgeon. This research shows that to assist in the progressivity of surgeon-patient consultations, referral letters should be clear and patients made aware of the reason for referral. Surgeons should also overtly address the minimized epistemic distance caused by the referral letter to ensure patients present their problems in full.

Home as a hybrid centre of medication practice.

This article presents research that explores how medications are understood and used by people in everyday life. An intensive process of data collection from 55 households was used in this research, which included photo-elicitation and diary-elicitation interviews. It is argued that households are at the very centre of complex networks of therapeutic advice and practice and can usefully be seen as hybrid centres of medication practice, where a plethora of available medications is assimilated and different forms of knowledge and expertise are made sense of. Dominant therapeutic frameworks are tactically manipulated in households in order for medication practices to align with the understandings, resources and practicalities of households. Understanding the home as a centre of medication practice decentralises the role of health advisors (whether mainstream or alternative) in wellness practices.

Nurse-patient communication in primary care diabetes management: an exploratory study.

BACKGROUND: Diabetes is a major health issue for individuals and for health services. There is a considerable literature on the management of diabetes and also on communication in primary care consultations. However, few studies combine these two topics and specifically in relation to nurse communication. This paper describes the nature of nurse-patient communication in diabetes management. METHODS: Thirty-five primary health care consultations involving 18 patients and 10 nurses were video-recorded as part of a larger multi-site study tracking health care interactions between health professionals and patients who were newly diagnosed with Type 2 diabetes. Patients and nurses were interviewed separately at the end of the 6-month study period and asked to describe their experience of managing diabetes. The analysis used ethnography and interaction analysis.In addition to analysis of the recorded consultations and interviews, the number of consultations for each patient and total time spent with nurses and other health professionals were quantified and compared. RESULTS: This study showed that initial consultations with nurses often incorporated completion of extensive checklists, physical examination, referral to other health professionals and distribution of written material, and were typically longer than consultations with other health professionals. The consultations were driven more by the nurses' clinical agenda than by what the patient already knew or wanted to know. Interactional analysis showed that protocols and checklists both help and hinder the communication process. This contradictory outcome was also evident at a health systems level: although organisational targets may have been met, the patient did not always feel that their priorities were attended to. Both nurses and patients reported a sense of being overwhelmed arising from the sheer volume of information exchanged along with a mismatch in expectations. CONCLUSIONS: Conscientious nursing work was evident but at times misdirected in terms of optimal use of time. The misalignment of patient expectations and clinical protocols highlights a common dilemma in clinical practice and raises questions about the best ways to balance the needs of individuals with the needs of a health system. Video- recording can be a powerful tool for reflection and peer review.

Talking with the alien: interaction with computers in the GP consultation.

This study examines New Zealand GPs' interaction with computers in routine consultations. Twenty-eight video-recorded consultations from 10 GPs were analysed in micro-detail to explore: (i) how doctors divide their time and attention between computer and patient; (ii) the different roles ascribed to the computer; and (iii) how computer use influences the interactional flow of the consultation. All GPs engaged with the computer in some way for at least 20% of each consultation, and on average spent 12% of time totally focussed on the computer. Patterns of use varied; most GPs inputted all or most notes during the consultation, but a few set aside dedicated time afterwards. The computer acted as an additional participant enacting roles like information repository and legitimiser of decisions. Computer use also altered some of the normal 'rules of engagement' between doctor and patient. Long silences and turning away interrupted the smooth flow of conversation, but various 'multitasking' strategies allowed GPs to remain engaged with patients during episodes of computer use (e.g. signposting, online commentary, verbalising while typing, social chat). Conclusions were that use of computers has many benefits but also significantly influences the fine detail of the GP consultation. Doctors must consciously develop strategies to manage this impact.

Understanding communication between surgeon and patient in outpatient consultations.

BACKGROUND: There is an assumption that there is a similarity between surgeon-patient and primary care consultations. Yet, surgeon communication has had far less analytic attention than its primary care counterparts. Therefore, this assumption of similarity (and the proposition here of dissimilarity) has yet to be evidenced through detailed interactional analysis. METHODS: Conversation analysis (CA) is a methodology used to understand both mundane and institutional interactions. Using CA, we have developed an understanding of surgeon-patient interactions in outpatient clinic settings in New Zealand. Rather than attempting to determine what 'bad' communication is, we describe and analyse what occurs routinely in surgeon-patient consultations, particularly how these interactions are built up by both patient and doctor. RESULTS: This research shows that while surgeon-patient consultations share some similarities to the overall structure of primary care consultations, there are two unique structures that occur in surgical consultations. These structures follow a logical progression of activities and are influenced by the type of visit (referred versus follow-up). DISCUSSION: This article summarizes the first comprehensive description of the overall interactional structure of surgeon-patient consultations. It demonstrates that surgeon-patient consultations are structurally distinct from primary care consultations. This key finding has implications for surgeon-specific research and education, highlighting the need to question current assumptions in communication training and in clinical practice.

Public Beliefs about Antibiotics, Infection and Resistance: A Qualitative Study.

We aimed to gain an in-depth understanding of public views and ways of talking about antibiotics. Four focus groups were held with members of the public. In addition, 39 households were recruited and interviews, diaries of medicine taking, diaries of any contact with medication were used to explore understanding and use of medication. Discussions related to antibiotics were identified and analyzed. Participants in this study were worried about adverse effects of antibiotics, particularly for recurrent infections. Some were concerned that antibiotics upset the body's "balance", and many used strategies to try to prevent and treat infections without antibiotics. They rarely used military metaphors about infection (e.g., describing bacteria as invading armies) but instead spoke of clearing infections. They had little understanding of the concept of antibiotic resistance but they thought that over-using antibiotics was unwise because it would reduce their future effectiveness. Previous studies tend to focus on problems such as lack of knowledge, or belief in the curative powers of antibiotics for viral illness, and neglect the concerns that people have about antibiotics, and the fact that many people try to avoid them. We suggest that these concerns about antibiotics form a resource for educating patients, for health promotion and social marketing strategies.

The debate about the funding of Herceptin: a case study of 'countervailing powers'.

In December 2008 the newly elected Prime Minister of New Zealand bypassed the agency that negotiates with manufacturers about the cost of medicines and agreed to fund Herceptin for women with early stage breast cancer for a twelve months course of treatment. This paper describes the unfolding of this decision and seeks to explain it in terms of the theory of countervailing powers, which has recently been applied to understand the rapid growth of medicines and the governance of the pharmaceutical industry. We explore the role of various actors in this debate about Herceptin funding, drawing on documentary analysis based on a systematic search of journals, websites and media databases. The case of Herceptin both confirms and questions the propositions of countervailing powers theory. On the one hand the manufacturers of the drug proved to be highly influential in their attempts to get Herceptin funded and were generally supported by consumer groups. On the other hand some scientists and regulators attempted to challenge the power of the manufacturers, with the regulators not showing signs of corporate bias as one might expect. Groups did not, as has been proposed, exert power monolithically, with several groups exhibiting opposing factions. The media, ignored in this literature, are considered as a potential countervailing force in the debate. In the end the government bypassed the recommendation of its regulators, thereby undermining the latter's efforts to act as a countervailing power.