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.

'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.

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.

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.

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.

Supported decision-making from the perspectives of mental health service users, family members supporting them and mental health practitioners.

BACKGROUND: Supporting the decision-making of mental health service users fulfils professional, ethical and moral obligations of mental health practitioners. It may also aid personal recovery. Previous research on the effectiveness of supported decision-making interventions is limited. AIMS: The study aims to explore from several perspectives the barriers and facilitators to supported decision-making in an Australian context. Supported decision-making was considered in terms of interpersonal experiences and legal supported decision-making mechanisms. METHODS: In all, 90 narrative interviews about experiences of supported decision-making were conducted and analysed. Participants were mental health service users who reported diagnoses of schizophrenia, psychosis, bipolar disorder and severe depression; family members supporting them and mental health practitioners, including psychiatrists. The data were analysed thematically across all participants. RESULTS: Negative interpersonal experiences in the mental health care system undermined involvement in decision-making for people with psychiatric diagnoses and family carers. Mental health practitioners noted their own disempowerment in service systems as barriers to good supported decision-making practices. All groups noted the influence of prevailing attitudes towards mental health service users and the associated stigma and discrimination that exist in services and the broader community. They believed that legal supported decision-making mechanisms facilitate the participation of mental health service user and their family supporters in supported decision-making. CONCLUSIONS: Enabling supported decision-making in clinical practice and policy can be facilitated by (1) support for good communication skills and related attitudes and practices among mental health practitioners and removing barriers to their good practice in health and social services and (2) introducing legal supported decision-making mechanisms.

Supported Decision-Making: The Expectations Held by People With Experience of Mental Illness.

Supported decision-making (SDM) is a principle guiding mental health service provision, which aims to improve people's ability to make informed decisions about their care. Understanding diverse individual needs is vital to its success. Based on 29 narrative interviews with people diagnosed with mental illness in Australia, we examine how participants reflected on their own experiences of SDM. We find that participants' conceptualization of mental health expertise, their own experiences and sense of agency, and their varying needs for dependence and independence influenced their relationships with mental health practitioners. These factors in turn shaped their expectations about SDM. Four narrative positions emerged: the "Inward Expert," the "Outward Entrustor," the "Self-Aware Observer," and the "Social Integrator." These positionings influenced the type or style of support that participants expected and considered most useful. Our findings are relevant to developing effective approaches to SDM that take into account service users' needs and preferences.

Experiences of depression, the role of social support and its impact on health outcomes.

BACKGROUND: Little research has been conducted into the value of support from the perspective of the person experiencing depression, or the types of support that are valued. AIM: In this article we aim to identify the beneficial sources of social support, what form these took, and when and how these sources of support helped. METHODS: Narrative interviews with a maximum variation sample of 42 Australians who had experienced depression. Interviews were audio and/or video recorded, transcribed verbatim and analysed using a coding framework and thematic analysis. RESULTS: Themes included "early warning system," "staying the course" and "striving for 'normality.'" Practical support made a difference to participants' health outcomes such as hospitalisation and access to therapy. Seemingly invisible sources of support were recognised and acknowledged by participants particularly when they were seeking to maintain wellness. CONCLUSIONS: Support varied according to the trajectory of the depression experience. Some forms of support can make a real difference to health outcomes. We propose an alternative interpretation to current understandings about the role of social support.

"Here nobody holds your heart": metaphoric and embodied emotions of birth and displacement among Karen women in Australia.

Our objective was to explore the ways in which displaced Karen mothers expressed emotions in narrative accounts of motherhood and displacement. We contextualized and analyzed interview data from an ethnographic study of birth and emotions among 15 displaced Karen mothers in Australia. We found that women shared a common symbolic language to describe emotions centered on the heart, which was also associated with heart "problems." This, along with hypertension, collapsing, or a feeling of surrender were associated responses to extremely adverse events experienced as displaced peoples. A metaphoric schema of emotional terms centered on the heart was connected to embodied expressions of emotion related to illness of the heart. This and other embodied responses were reactions to overwhelming difficulties and fear women endured due to their exposure to political conflict and global inequity.

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.

The emotional labour of peer work: encountering stigma in mental healthcare spaces.

This article focuses on the workplace experiences of peer workers with a diagnosis of borderline personality disorder (BPD) in mental healthcare settings in Australia. Our article is located at the intersection of political, social, cultural, and legislative forces that have fostered the development of peer work as a paid profession. We draw on the concept of stigma to analyse findings from qualitative interviews with peer workers conducted in [state], Australia. By examining peer work in the broader context of lifeworlds of BPD, we address the interplay of work and professional identity, and the experience of a profoundly stigmatised diagnosis at this intersection.Our findings demonstrate the physical and emotional effects of stigma and how it produces boundaries and inequalities between peer workers and other health practitioners. These boundaries are reinforced by invisible markers that delineate what is expected, 'normal' and deemed professional in the workplace. Moreover, these same medico-socio-political relations help shape peer workers' identities and experiences. The development of peer workforces in mental healthcare service delivery is a prominent area of reform in Australia and internationally. Our research highlights the urgency of efforts to transform current socio-cultural-political relations that inhibit peer workers in their roles and impact workplace experiences.

Depression: the ambivalence of diagnosis.

The diagnosis of depression in the clinical context is extremely controversial and is subject to criticism of over-medicalisation and pharmaceuticalisation. Depression can be conceptualised across the entire spectrum of lay and medical belief, from the 'normal' highs and lows of the human condition to its inclusion in the dominant Diagnostic and Statistical Manual of Mental Disorders classificatory system, as a form of serious mental illness. In this context, a better understanding of how people describe, experience, negotiate and participate in the process of diagnosis is needed. This article draws on qualitative interviews to explore lay accounts of being diagnosed with depression. The findings reveal that lay accounts of depression vacillate in and out of the medicalised discourse of depression, highlighting the limitations of the biomedical approach to diagnosis and treatment.

Maps, models, and narratives: the ways people talk about depression.

Many researchers within the social sciences, medicine, and humanities have examined the ways people talk and think about depression. In their research and published literature they have attempted to determine the theoretical frameworks and appropriate language for categorizing such concepts and understandings. Drawing from mental health and broader social science scholarship, in this article we examine three approaches to developing an inclusive understanding of depression experiences: explanatory models, exploratory maps, and illness narratives. Utilizing these terms in the analysis of a single dataset, we identified multiple conceptual terms with potential analytical validity. Furthermore, we argue that variable usage and meanings of these concepts among lay people might contribute to a shared understanding of depression between lay people and experts, and ultimately have positive consequences for clinical practice.

"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.

Managing depression among ethnic communities: a qualitative study.

PURPOSE: Clinical care for depression in primary care negotiates a path between contrasting views of depression as a universal natural phenomenon and as a socially constructed category. This study explores the complexities of this work through a study of how family physicians experience working with different ethnic minority communities in recognizing, understanding, and caring for patients with depression. METHODS: We undertook an analysis of in-depth interviews with 8 family physicians who had extensive experience in depression care in 3 refugee patient groups in metropolitan Victoria and Tasmania, Australia. RESULTS: Although different cultural beliefs about depression were acknowledged, the physicians saw these beliefs as deeply rooted in the recent historical and social context of patients from these communities. Traumatic refugee experiences, dislocation, and isolation affected the whole of communities, as well as individuals. Physicians nevertheless often offered medication simply because of the impossibility of addressing structural issues. Interpreters were critical to the work of depression care, but their involvement highlighted that much of this clinical work lies beyond words. CONCLUSIONS: The family physicians perceived working across cultural differences, working with biomedical and social models of depression, and working at both community and individual levels, not as a barrier to providing high-quality depression care, but rather as a central element of that care. Negotiating the phenomenon rather than diagnosing depression may be an important way that family physicians continue to work with multiple, contested views of emotional distress. Future observational research could more clearly characterize and measure the process of negotiation and explore its effect on outcomes.