Talking about borderline personality disorder, shaping care: The multiple doings of narratives.

This article focuses on the narratives that circulate about borderline personality disorder (BPD) in health-care settings in Australia and the effects such narratives can have on how people practice and seek out care. People with a BPD diagnosis frequently access health-care services, often encountering stigma and discrimination. Drawing on narrative theory, we critically unpack the circulation and capacities of BPD narratives and the ways they can often contribute to poor and troubling experiences. This article is based on qualitative interviews with people living with a BPD diagnosis, as well as health practitioners who work with people with a BPD diagnosis. Our findings identified insidious and powerful BPD narratives that circulate in health-care settings, particularly in short-term, acute, or non-specialist contexts, such as emergency departments and in-patient units. These narratives influenced the ways that participants both practiced and sought out care. To improve health service quality for people with a BPD diagnosis, or those experiencing mental distress, it is important to challenge the sociocultural-political norms and relations that can influence approaches to care and practice. Disrupting and reframing negative BPD narratives and raising awareness about the impact of stories that are told about BPD have the potential to generate social change.

Experimenting with arts-based methods and affective provocations to understand complex lived experience of a diagnosis of borderline personality disorder.

This article draws on arts-based psycho-social research to explore embodied and visceral knowing and feeling in the context of people living with a diagnosis of borderline personality disorder (BPD). It presents a discussion of creative artworks solicited through a nation-wide online survey conducted in Australia in 2021 that generated intimate and affective understanding about living with a diagnosis of BPD. To investigate what lived experiences of distress associated with a BPD diagnosis communicate through sensation, emotion, image and affective capacity, the authors put to work Blackman's (2015) concept of "productive possibilities of negative states of being" and the broader theoretical framework of new materialism. This approach allows a more transformative feeling-with that exceeds the normative affective repertoires and scripts associated with a diagnosis of BPD. The authors recognise the often unspoken and invisible affects of complex mental distress and trauma, and purposefully open the space for affective and symbolic aspects of creative artworks to communicate what is less known or has less presence in dominant biomedical frameworks about living with a BPD diagnosis. The article foregrounds the lived and living experience of participants to generate experiential rather than clinical understandings of the diagnosis.

A qualitative study of work and early menopause: 'On-the job' experiences and career trajectories.

OBJECTIVES: Early menopause or premature ovarian insufficiency (POI), menopause occurring before age 45 and 40 years respectively, occur at the age when most women are establishing or consolidating their careers. Studies of older postmenopausal women indicate an adverse bidirectional relationship between menopause and work. However, data are lacking regarding the work experiences of women with early menopause or POI. We explored the experiences of women with early menopause or POI in relation to work. STUDY DESIGN: Using maximum variation sampling, 30 women (median age 44 years and 38 years at menopause diagnosis) of diverse backgrounds and menopause causes (16/30 iatrogenic) participated in qualitative interviews to explore experiences of early menopause/POI in the context of their overall lives, work and career. Dual thematic (themes identified across interviews) and thematic narrative (themes identified within individual interviews) analysis was done using NVivo 12 software. MAIN OUTCOME MEASURES: Themes related to work experiences and influencing factors. RESULTS: Two major themes were identified: 'on-the-job' experiences (work performance, bodily presentation and disclosure) and career trajectories (intact and altered). Factors impacting the interaction between work and early menopause/POI included: career (type of work, environment, working conditions), personal (age, socio-economic background, family arrangements, migration history) and menopause experience (spontaneous versus iatrogenic, treatment complexity). CONCLUSIONS: Early menopause/POI has multiple impacts on women's work experiences and career trajectories. As with older postmenopausal women, career and personal factors influence younger women's work experience. However, this research highlights differences associated with menopause occurring at an earlier, often unexpected age compared with menopause at the usual age.

"Live Gerontology": Understanding and Representing Aging, Loneliness, and Long-Term Care Through Science and Art.

This article proposes an expansive conceptualization of gerontological research by engaging with a "live gerontology" that combines sciences and arts to better understand and represent aging and its diverse meanings and contexts. Borrowing the sociological concept of "live methods," we argue that gerontology can benefit from a "live" approach-not only methodologically, but also conceptually. To guide pathways between artistic and gerontological fields and frame its practices and outcomes, we suggest four propositions for a live gerontology: (1) using multiple genres to artfully connect the whole-interweaving micro-, meso-, and macrolevels to contextualize aging within various sociocultural milieus; (2) fostering the use of the senses to capture more than just what people say-what they do, display, and feel; (3) enabling a critical inventiveness by relying on arts' playfulness to design/refine instruments; and (4) ensuring a constant reflection on ethics of representation and public responsibility. To apply and experiment with a live gerontological approach, we describe collaborations with an award-winning writer and an illustrator. The collaborations drew on qualitative data from a study on lived experiences of loneliness in long-term care through ethnography and interviews with residents of 2 Australian facilities. The writer explored participants' accounts as creative stories, which were then illustrated. Motivated by an ethics of representation, we aimed to represent findings without othering or further marginalizing participants. The creative materials offered more than appealing representations, shining new light on the intricate nature of aging, loneliness, institutionalization, and gerontology research and practice.

Entanglements and imagined futures: The subject(s) of precision in oncology.

Precision oncology holds an increasingly powerful social function. In the era of precision, how people encounter, live with, and experience cancer, how they imagine their lives, how they navigate treatment regimens, and experience side effects, have been radically transformed. Innovations in oncology - in this case precision-related - are always more-than-clinical; their circulation exceeds the laboratory and the hospital, but what this 'circulation of innovation' produces has been thus far opaque. To begin to comprehend what is emergent at the cancer-precision nexus in people's everyday lives, we draw on qualitative interviews with twenty people diagnosed with metastatic non-small cell lung cancer undergoing immunotherapy and/or targeted therapy and we discuss how precision inflects survivorship, entangles subjects in chronic living, and induces novel temporalities. Through such inflections of survivorship, precision innovation re-shapes expectations and possibilities, and sometimes enacts new, unexpected (or, for some, unwanted) futures. Such illness and survivorship narratives indicate the importance of orientating the social science scholarship toward considerations of temporality and entanglements for comprehending precision innovation in oncology. And in doing so, provide a nuanced account of how innovations unsettle and recast, rather than unravel, the normative scene of cancer.

Positive impact of a co-designed digital resource for women with early menopause.

OBJECTIVE: To evaluate a co-designed early menopause digital resource, including audio/video clips, question prompt list, and information links. METHODS: Pre/post-test study. Women with early menopause, defined as menopause before age 45 years, were recruited from the community. Following online informed consent, participants were emailed links to the digital resource and online surveys to complete before (baseline) and, immediately and 1 month after viewing the resource. Main outcome measures: Health-related empowerment (Health Education Impact Questionnaire), illness perception (Brief Illness Perception Questionnaire), menopause symptoms (Greene Climacteric Scale), risk perception, and knowledge change. RESULTS: One hundred fifty women participated. Compared to baseline, at 1-month health-related empowerment, 'health directed behavior' scores increased (mean change: +0.13; 95% CI: 0.01-0.24; and P = 0.03), 'emotional distress' decreased (mean change: -0.15; 95% CI: -0.25 to -0.05; and P = 0.003) and physical and emotional menopause symptom scores decreased (P = 0.001 and P  = 0.02, respectively). Illness perception scores increased at both immediate and 1-month follow-up versus baseline for 'personal control' (P < 0.001 and P  = 0.02) and 'coherence' (P = 0.003 and P  < 0.001). After viewing the digital resource, more women perceived that hormone therapy decreases heart disease risk, reduces hot flashes, and prevents fractures versus baseline (all P  < 0.05). More women correctly answered questions regarding early menopause prevalence (60% vs 35%), cause (46% vs 33%), risk (76% vs 55%), effect of phytoestrogens (60% vs 27%), and osteoporosis prevention (64% vs 44%) at immediate or 1-month follow-up versus baseline (all P  < 0.05). CONCLUSIONS: A co-designed early menopause digital resource may improve women's health-related empowerment, illness perception, menopause symptoms, risk perception, and knowledge.

Video Summary:http://links.lww.com/MENO/A923 .

A critical review of research into mental health consumers' perspectives on their physical health: Is there an absence of consumers in the design, conduct, analysis and reporting of this research?

We conducted a critical review, using systematic methods, of the literature examining mental health consumer perspectives on their physical and mental health in academic research published between 2005 and 2021. This review examined the inclusion, extent, type and centrality of consumer perspectives regarding their mental and physical health. The search produced 1,865 papers from which 116 met the inclusion criteria. Studies predominantly focused on consumers' individual experiences of their physical and mental health, including but not limited to their understandings and experiences of medication and associated risk factors. They also captured some social aspects of mental health consumers' physical health, including factors that impacted individual agency, stigma, and social and interpersonal factors. Structural factors affecting physical and mental health, such as accessibility of services and financial constraints, were also identified. The review revealed that in comparison to clinician perspectives, the direct representation of consumer perspectives was lacking. Similarly, while clinician and carer perspectives on structural factors were investigated, the consumer perspective in this area was missing. The review also found few genuine codesigned or coproduced research studies. To better identify and respond to the health needs as prioritized by consumers, this paper argues it is imperative that future studies prioritize codesigned and coproduced research. It is argued that a focus on "services as provided" rather than "services as received" has contributed to a lack of progress in addressing the life expectancy gap for consumers. It is recommended that journals, ethics committees and research policy organizations develop guidelines and standards to inform best practice in research on consumer perspectives and experience and to support the implementation of codesigned and/or coproduced approaches in future research. Respecting and including consumers as equal partners in the research process will lead to more meaningful insights to inform policy and practice and reduce the life expectancy gap for people living with mental health concerns.

Living with and beyond metastatic non-small cell lung cancer: the survivorship experience for people treated with immunotherapy or targeted therapy.

PURPOSE: Immunotherapy (IT) and targeted therapy (TT) have improved survival for some patients with metastatic non-small cell lung cancer (NSCLC). Their lived experience is under-studied. We conducted a single centre, qualitative study to understand concerns and unmet needs amongst this novel survivor population. METHODS: Eligible participants had metastatic NSCLC, aged >18, English-speaking and >6 months post initiation of IT/TT without progressive disease. Semi-structured interviews focused on physical, psychological, social and functional impacts of diagnosis, therapy and prognosis. Interviews were recorded and transcribed. Data were analysed via qualitative thematic analysis. RESULTS: Between May and December 2019, 20 participants were interviewed: median age 62 (range 34-83), 13 (65%) female; median time since diagnosis of metastatic NSCLC 27 months (range 10-108). Twelve out of 20 (60%) participants had a targetable mutation (EGFR/ALK/BRAF); 6 were receiving IT, 11 TT, 2 IT + chemotherapy and 1 IT + TT. Four main themes were identified: living long-term on IT and TT (chronic toxicities), psychological concerns (living with uncertainty, fear of cancer progression, scan-related anxiety), support with practical issues (finances, employment amidst prognostic uncertainty, challenges with trial participation) and wanting information pertinent to NSCLC subtype. CONCLUSIONS: Longer-term survivors of metastatic NSCLC experience significant physical, psychological and functional concerns and unmet needs. Results will inform a broader cross-sectional survey and resources to address the needs of this growing survivor group. IMPLICATIONS FOR CANCER SURVIVORS: A 'one-size-fits-all' approach to NSCLC survivorship is no longer appropriate. Survivors of metastatic NSCLC treated with novel therapies may benefit from specific information regarding long-term toxicities and psychological supports.

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.

'My relationships have changed because I've changed': biographical disruption, personal relationships and the formation of an early menopausal subjectivity.

Early menopause (EM) or premature ovarian insufficiency (POI) can disrupt gendered and age-related expectations associated with perceived 'normative' biographies for young adult women, with implications for subjectivity and relationships. While previous qualitative research has concentrated on the impacts of EM/POI on biography and sense of self, in this article, we examine the enmeshment of personal relationships with the formation of early menopausal subjectivities. Drawing on research exploring concepts of 'biographical disruption' and personal relationships, and theoretical work on social norms and subject formation, we present findings from a narrative thematic analysis of 25 interviews with women diagnosed with spontaneous or medically induced EM/POI. We identify three main narrative 'types' of subjective and relational experience in response to the 'disruption' of EM/POI: interlude and continuity; disruption and adaptation; and disruption and ambivalence. Women's accounts of their experience of EM/POI indicate that the formation of early menopausal selves is mediated by the extent to which women and those around them identify with gendered norms related to reproduction and age. Consistent with theoretical perspectives that consider the self as relationally produced, we argue that the subjective and relational dimensions of EM/POI are intertwined and must be understood in tandem.

Co-designing an Early Menopause Digital Resource: Model for Interdisciplinary Knowledge Translation.

Early menopause/premature ovarian insufficiency is associated with negative health impacts, unmet information needs, delayed diagnosis, and variation in management. Co-designed digital resources for women with early menopause/premature ovarian insufficiency and health practitioners were developed to address information needs and support management. A five-phase mixed methods multidisciplinary research, co-design and translation process comprised: (1) survey/interviews with women and health practitioners to explore early menopause/premature ovarian insufficiency needs, experiences, and management; (2) appraisal of clinical guidelines to develop management algorithms; (3) digital resource development (https://healthtalkaustralia.org/early-menopause-experiences-and-perspectives-of-women-and-health-professionals/; (4) evaluation; and (5) dissemination/implementation. The digital resources included audio/video clips of women with early menopause/premature ovarian insufficiency and health practitioners providing early menopause/premature ovarian insufficiency care, a question prompt list, health practitioner algorithms, information links, and a list of services for women, achieving high satisfaction ratings from women and health practitioners. Engaging our stakeholder partners, multimodal dissemination has included community and conference presentations, social media, lay and professional publications, and webinars. This project provides a model for successful interdisciplinary co-design research translation to improve women's health.

Perspectives on person-centred care for borderline personality disorder: a critical research agenda.

Borderline Personality Disorder (BPD) is a highly contentious psychiatric diagnosis with ongoing tensions over nomenclature, aetiology and treatment recommendations. This article examines a number of these tensions and assesses how greater attention to the voices of people living with BPD may help inform the delivery of new modes of person-centred care. To this end, we present a critical social science research agenda for investigating the experiences, social contexts and support needs of people living with BPD. We canvass issues pertaining to the diagnosis of BPD (including its name), the strongly gendered dimensions of BPD, and the pressing need to improve support for people living with this condition. Throughout our analysis, we indicate how critical interdisciplinary inquiry may drive new responses to these challenges. Our analysis is illustrated with reference to experiences of BPD recounted in two Australia-wide surveys conducted in 2011 and 2017. We argue that greater progress towards person-centred care requires novel forms of evidence grounded in critical social inquiry into experiences of treatment and support among people living with BPD, and the varied social, cultural and political contexts underpinning these experiences.

Women's Experiences of Diagnosis and Treatment of Early Menopause and Premature Ovarian Insufficiency: A Qualitative Study.

Early menopause (EM) and premature ovarian insufficiency (POI) affect an estimated 10% of women and can precipitate a wide range of physiological and personal impacts. Receiving a diagnosis of EM/POI and navigating treatment can be complex experiences for women; however, qualitative research exploring these aspects of the condition is limited. Our study aimed to increase understanding of women's lived experiences of EM/POI encompassing its medical, social, and emotional dimensions. We conducted narrative interviews with 30 women aged 28 to 51 years with spontaneous and iatrogenic EM/POI and menopausal symptoms resulting from ovarian suppression therapy, and analyzed transcripts thematically. This article examines the prominent and under-researched themes of women's experiences of navigating "diagnosis" and treatment. Diagnosis emerged as a complex and changeable process wherein women had to negotiate a diagnosis of spontaneous EM/POI and grasp the meaning and probability of iatrogenic EM/POI. Navigating treatment entailed further complexity as women grappled with the risks and efficacy of hormonal and non-hormonal medications. The findings underline the intricacies of EM/POI as a biomedical phenomenon and highlight the need for health practitioners to recognize and respond to the challenges women face in coming to terms with the condition and managing its embodied effects.

Estranged relations: coercion and care in narratives of supported decision-making in mental healthcare.

Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare.

Individualising difference, negotiating culture: Intersections of culture and care.

In this article, we focus on developing a critical sociology of 'cultural and linguistic diversity' as evident in cancer care praxis, drawing on the perspectives of cancer care health professionals. Set within the context of increasing efforts on the part of healthcare providers to 'accommodate difference' and 'incorporate diversity', we aimed to utilise participants' accounts of practice to ask: how do we and how should we think about and operationalise 'culture' (if at all) in cancer care settings. Drawing on eight focus groups with doctors, nurses, allied health staff and multicultural community workers, here we explore their accounts of: othering and over-simplification; the role of absences in biographical reciprocity; intimacy, care and carelessness; and entanglements of culture with other aspects of the person. Based on their accounts, we argue for a broadening of the examination of the nexus of culture and care, to focus on the problematics of othering, intimacy, reciprocity and complexity.

Community Treatment Orders and Supported Decision-Making.

This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.

"It's the worst bloody feeling in the world": Experiences of loneliness and social isolation among older people living in care homes.

Loneliness and social isolation in later life result in social exclusion, reduced well-being, and significant health problems. Yet, we have a limited understanding of the meanings that older people ascribe to loneliness and social isolation, and how they live through and cope with these issues. The scarce research on the topic largely reflects the experiences of older people living in the community. Less is known about the lived experiences of those in institutionalized settings, despite this group's vulnerability to loneliness and social isolation. To address this gap, we conducted a six-month multi-method qualitative study in two Australian care homes. The study included participant observation and interviews with twenty-two residents experiencing (or at risk) of loneliness and/or social isolation. Our findings show that participants understood loneliness and social isolation as relational and associated with oldering (age-related contexts, norms, status), personal troubles, and sickness. They therefore situated loneliness and social isolation as multidimensional phenomena: related to both structural (e.g., oldering) and agentic (e.g., personal choices) dimensions. Although participants acknowledged the structural aspects of loneliness and isolation, most felt it was their own responsibility to address it. They employed individual and social strategies to cope with and regulate disclosure of loneliness and isolation. Our study drew on interactionism and situationism (Erving Goffman) along with an emotion work approach (Arlie Hochschild) to provide a richer understanding of the lived experiences of loneliness and social isolation among frail older people living in care homes.

Unravelling subjectivity, embodied experience and (taking) psychotropic medication.

This paper explores how distinctions between 'intended' and 'side' effects are troubled in personal narratives of taking psychotropic medications. Grounded in interviews with 29 participants diagnosed with mental illness in Victoria, Australia between February and December 2014, we consider how people interpret pharmaceutical compounds beyond their desired or intended effects, and how such effects shape and transform subjectivity and their relationship with their bodies. This paper contributes to recent discussions of mental illness and medication effects, informed by feminist science studies. It emphasises the co-constitution of social, affective and material relations in the context of 'taking' psychotropic medication. This paper discusses three key themes as important to the phenomenology of the nexus of illness and psychotropic medication: movement, ambivalence, and sociality. Our analysis demonstrates how psychotropic drugs are productive of subjectivity through their promises and potential, their unexpected harms and the institutions from which they are inseparable.

Going Online: The Affordances of Online Counseling for Families Affected by Alcohol and Other Drug Issues.

Online counseling can overcome barriers families face when accessing support services for issues such as a relative's alcohol or other drug use. However, little research has explored how online counseling platforms assist family members to improve their well-being and support their relative. We thematically analyzed 90 transcripts of online counseling sessions with family and friends of people who use alcohol, opioids, and amphetamines in Australia between 2015 and 2016. In our analysis, we drew on the concept of affordances to articulate how online platforms afford or constrain potentially therapeutic encounters with families. We found online counseling enabled families to make first contact, relieve distress, plan appropriate action, improve communication, regain direction, and connect with local services. Sessions were constrained by Internet access, web-chat communication, counselors' focus on referral, and limitations in addressing the wider concerns of families. The findings present opportunities for improving online services for families.

A qualitative study of cancer care professionals' experiences of working with migrant patients from diverse cultural backgrounds.

OBJECTIVES: To improve the experiences of people from diverse cultural backgrounds, there has been an increased emphasis on strengthening cultural awareness and competence in healthcare contexts. The aim of this focus-group based study was to explore how professionals in cancer care experience their encounters with migrant cancer patients with a focus on how they work with cultural diversity in their everyday practice, and the personal, interpersonal and institutional dimensions therein. DESIGN: This paper draws on qualitative data from eight focus groups held in three local health districts in major metropolitan areas of Australia. Participants were health professionals (n=57) working with migrants in cancer care, including multicultural community workers, allied health workers, doctors and nurses. Focus group discussions were audio recorded and transcribed in full. Data were analysed using the framework approach and supported by NVivo V.11 qualitative data analysis software. RESULTS: Four findings were derived from the analysis: (1) culture as merely one aspect of complex personhood; (2) managing culture at the intersection of institutional, professional and personal values; (3) balancing professional values with patient values and beliefs, and building trust and respect; and (4) the importance of time and everyday relations for generating understanding and intimacy, and for achieving culturally competent care. CONCLUSIONS: The findings reveal: how culture is often misconstrued as manageable in isolation; the importance of a renewed emphasis on culture as interpersonal and institutional in character; and the importance of prioritising the development of quality relationships requiring additional time and resource investments in migrant patients for enacting effective intercultural care.