Love and incomprehensibility: The hermeneutic labour of caring for and understanding a loved one with psychosis.

Informal carers are increasingly involved in supporting people with severe and enduring mental health problems, and carers' perceptions impact the wellbeing of both parties. However, there is little research on how carers actually make sense of what their loved one is experiencing. Ten carers were interviewed about how they understood a loved one's psychosis. Data were analysed using a hermeneutic-phenomenological approach. Three themes described the carers' effortful quest to understand their loved one's experiences while maintaining their relational bonds. Carers described psychosis as incomprehensible, seeing their loved one as incompatible with the shared world. To overcome this, carers developed hermeneutic 'mooring points', making sense of their loved one's unusual experiences through novel accounts that drew on material or spiritual explanations. The findings suggest that informal carers resist biomedical narratives and develop idiosyncratic understandings of psychosis, in an attempt to maintain relational closeness. We suggest that this process is effortful - it is hermeneutic labour - done in the service of maintaining the caring relationship. Findings imply that services should better acknowledge the bond between carers and care-receivers, and that more relationally oriented approaches should be used to support carers of people experiencing severe mental health problems.

'Never drop without your significant other, cause that way lies ruin': The boundary work of couples who use MDMA together.

MDMA has a variety of pro-social effects, such as increased friendliness and heightened empathy, yet there is a distinct lack of research examining how these effects might intertwine with a romantic relationship. This article seeks to compensate for this absence and explore heterosexual couples' use of MDMA through the lens of the boundaries they construct around these experiences. Three couple interviews, two diary interviews and eight written diaries about couples' MDMA practices were analysed. Douglas' (2001) and Stenner's (2013) work around order, disorder and what lies at the threshold between the two are employed here. This conceptual approach allows us to see what happens at the border of MDMA experiences as crucial to their constitution. Two main themes are identified in the data. First, MDMA use was boundaried from daily life both temporally and corporeally: the drug was tied to particular times in people's lives as well as the performance of rituals which engaged the material world and reenchanted everyday spaces and selves. Secondly, other people are excluded from MDMA experiences to varying degrees in order to preserve the emotionally intense space for the couple alone. This paper claims that MDMA use forms part of a spectrum of relationship 'work' practices; a unique kind of 'date night' that revitalises couples' connection. Hence, MDMA should be recognised as transforming couple as well as individual practices. Finally, it is suggested that harm reduction initiatives could distinguish more 'messy' forms of emotional harm and engage with users' language of 'specialness' to limit negative impacts of MDMA use.

The experiences of inpatient nursing staff caring for young people with early psychosis.

BACKGROUND: Early intervention services aim to improve outcomes for people with first episode psychosis and, where possible, to prevent psychiatric hospital admission. When hospitalisation does occur, inpatient staff are required to support patients and families who may be less familiar with services, uncertain about possible outcomes, and may be experiencing a psychiatric hospital for the first time. AIMS: Our study aimed to understand the process of hospitalisation in early psychosis, from the perspective of inpatient nursing staff. We were particularly interested in their experiences of working with younger people in the context of adult psychiatric wards. METHODS: Nine inpatient nursing staff took part in semi-structured interviews, which were transcribed and then analysed using interpretative phenomenological analysis. RESULTS: Five themes are outlined: 'it's all new and it's all learning'; the threatening, unpredictable environment; care and conflict within the intergenerational relationship; motivation and hope; and coping and self-preservation. CONCLUSIONS: The phenomenological focus of our approach throws the relational component of psychiatric nursing into sharp relief. We reflect on the implications for organisations, staff, families and young people. We suggest that the conventional mode of delivering acute psychiatric inpatient care is not likely to support the best relational and therapeutic outcomes.

Conducting sexualities research: an outline of emergent issues and case studies from ten Wellcome-funded projects.

This letter seeks to synthesise methodological challenges encountered in a cohort of Wellcome Trust-funded research projects focusing on sexualities and health. The ten Wellcome Trust projects span a diversity of gender and sexual orientations and identities, settings; institutional and non-institutional contexts, lifecourse stages, and explore a range of health-related interventions.  As researchers, we originate from a breadth of disciplinary traditions, use a variety of research methods and data sources. Despite this breadth, four common themes are found across the projects: (i) inclusivity, representations and representativeness, (ii) lumping together of diverse groups, (iii) institutions and closed settings (iv) ethical and governance barriers.

If psychosis were cancer: a speculative comparison.

Recently, health policy in the UK has begun to engage with the concept of 'parity of esteem' between physical and mental healthcare. This has led one recent initiative to improve service provision for first episode psychosis, which aims to bring it into line with some of the principles underpinning good practice in cancer care. In this paper, we consider some of the metaphorical consequences of likening psychosis to cancer. While we find the comparison unhelpful for clinical purposes, we argue that it can be a helpful lens through which to examine service provision for psychosis in young people. Through this lens, specialist community-based services would appear to compare reasonably well. Inpatient care for young people with psychosis, on the other hand, suffers very badly by comparison with inpatient facilities for teenage cancer care. We note some of the many positive features of inpatient cancer care for young adults, and-drawing upon previous research on inpatient psychiatric care-observe that many of these are usually absent from mental health facilities. We conclude that this metaphor may be a helpful rhetorical device for communicating the lack of 'parity of esteem' between mental and physical healthcare. This inequity must be made visible in health policy, in commissioning, and in service provision.

Exhausted without trust and inherent worth: A model of the suicide process based on experiential accounts.

RATIONALE AND METHODS: Suicides are related to diverse demographic, socio-economical, medical and behavioural 'risk factors'. Theoretical work in suicidology attempts to construct models that explicate the mechanisms underlying these suicides; however, models taking first person perspectives as their primary evidential bases are scarce. Drawing on interviews carried out by researchers at a UK mental health charity during 2010-2012 with people bereaved by suicide (n = 25), suicidal individuals (n = 14) and their 'significant others' (n = 15), we present an explanatory model of the process of suicide derived from a Grounded Theory study. RESULTS: Suicide/attempt can be understood as the result of a complex interaction of three elements of experience: 'lack of trust', 'lack of inherent worth' and 'suicidal exhaustion'. The first two may be seen as conditions from which the third emerges, but so that all the elements are related to each other reciprocally and the exhaustion and the suicidal thoughts, feelings and behaviours it gives rise to feed back into the initial conditions. Trust, understood as an aspect of experience that allows a person to accommodate uncertainty in relationships and in thinking about the future, is lacking in suicidal people, as is a self-determined sense of worth that is independent of external factors. Substituting inherent worth with self-worth gained from extrinsic factors, and trustful experiencing with strategies of self-reliance and withdrawal, a person begins to consume mental resources at a high rate. 'Suicidal exhaustion' is distinguished from other types of chronic mental exhaustion in that it is experienced as non-contingent (arises from living itself) and hopeless in that the exhausted person is unable to envisage a future in which demands on his/her mental resources are fewer, and their replenishment available. CONCLUSION: The model has potential applications for public participation in suicide prevention, which should be mapped and assessed in further research.

The experiential impact of hospitalisation: Parents' accounts of caring for young people with early psychosis.

This research examines the experiential impact of hospitalisation on the parents of young people with early psychosis. In-depth interviews were conducted with a small sample of parents, and the resulting transcripts were analysed using Interpretative Phenomenological Analysis. Five themes emerged from the data: Accepting and blaming, Feeling out of control, Hospitalisation as temporary containment, Feeling let down by services and Stigma. Aspects of the hospitalisation process were characterised by parents as generally negative, but a number of positive affirmations were also offered regarding the containing, supportive and crucial role of services. Parents' perceptions of hospitalisation as a difficult, and sometimes distressing, experience are exacerbated by the complexity of being the carer of a young person. Negotiating services and boundaries within the context of this relationship contributes to feelings of exclusion and disregard by professionals and services. The implications of this study resonate with the current government mental health strategy with regard to how services can engage and include carers in the mental health system, and equip and enable them to support their relatives with early psychosis.

Feelings and Intersubjectivity in Qualitative Suicide Research.

In this article, we explore how feelings permeated our qualitative research on suicide. Drawing on phenomenological theory, we argue for the epistemic and ethical importance of the feelings that emerge through research encounters, considering them to be embodied, intersubjective, and multilayered, and requiring careful interpretation through a "reflexivity of feelings." We sketch a tentative framework of the ways that we experienced feelings in our research and give three in-depth examples to illustrate some of the different layers and types of feelings we identified. We reflexively interpret these feelings and their role in our analysis and then discuss some of the ethical and methodological issues related to examining feelings in suicide research, and research more generally.

On the Brink of Genuinely Collaborative Care: Experience-Based Co-Design in Mental Health.

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. For young people with psychosis, being hospitalized is often distressing, and can lead to disengagement with mental health services. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We used an adapted form of experience-based co-design (EBCD), a participatory action-research method for collaboratively improving health care services. The use of EBCD is still relatively novel in mental health settings, and we discuss how we adapted the methodology, and some of the implications of using EBCD with vulnerable populations in complex services. We reflect on both the disappointments and successes and give some recommendations for future research and methodological development.

The experiential impact of hospitalisation in early psychosis: service-user accounts of inpatient environments.

Early Intervention in Psychosis services aim to keep young people out of hospital, but this is not always possible. This research used in-depth interviews to explore the experience of hospitalisation amongst young people with psychosis. Findings describe fear and confusion at admission, conflicting experiences of the inpatient unit as both safe and containing, and unsafe and chaotic, and the difficult process of maintaining identity in light of the admission. We discuss the need to move from construing psychiatric hospitals as places for 'passive seclusion', to developing more permeable and welcoming environments that can play an active role in recovery.

The impact of participating in suicide research online.

The impact of participation in online mixed-methods suicide research was investigated. Participants, who described feeling suicidal, completed an 18-item questionnaire before and after taking part (n = 103), and answered open-ended questions about participation (n = 97). Overall, participation reduced negative experiences and had no effect on positive experiences. Feelings of calm increased, but participants felt less supported. Some participants did experience distress, but some also reported this distress to be manageable. Anonymously sharing experiences of suicidality was viewed as important, had therapeutic benefits, and engendered hopes for recovery. The findings suggest a need to ensure vulnerable participants in online studies are well supported while protecting their anonymity.

Understanding treatment non-adherence in schizophrenia and bipolar disorder: a survey of what service users do and why.

BACKGROUND: Approximately half of service users with schizophrenia or bipolar disorder do not fully follow treatment recommendations. Studies of adherence have not adequately explored the frequency, consequences and meanings of non-adherence behaviours from service users' perspectives. This study contributes to a more fine-grained understanding of treatment choices and the support service users require in order to maximise benefit from their medications. METHODS: This was a mixed-methods questionnaire study, employing quantitative and thematic qualitative analyses. Thirty-five individuals with a diagnosis of, and receiving psycho-pharmaceutical treatment for, schizophrenia or bipolar disorder answered online or telephone questions about whether, how, and why they deviated from their treatment recommendations, and what support they currently and would like to receive. RESULTS: Over half of participants identified themselves as being non-adherent, however when asked in detail about intentional and unintentional adherence, 77% reported deviating from treatment recommendations. Critically, 29% were non-adherent and satisfied with being so. Service users' satisfaction with their support was positively correlated with satisfaction with their medication. Participants' made treatment choices in order to live well. Both side-effects and symptoms could be obstacles to adherence, but feeling well also impacted on participants' treatment choices. Treatment choices were often made in the context of living well day-to-day, and did not necessarily take into account longer-term effects of non-adherence. Participants wanted more information about their medications, better emotional support (including better access to psychological therapies) and stability in their relationships with health professionals. CONCLUSIONS: This study suggests that non-adherence, both intentional and unintentional, is common amongst individuals with diagnoses of schizophrenia and bipolar disorder, and that this often occurs without health professionals' knowledge or support. Treatment choices reflect a desire to live well, but are often driven by short-term needs. Given access to more information, and importantly to emotional support, service users could be helped to make treatment choices that adequately reflect the long-term risks of non-adherence, as well as allowing them to live well day-to-day. More research is required better to understand the meanings and complexities of service users' treatment choices.