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Aim: To critically examine nurses' experiences of speaking up during COVID-19 and the consequences of doing so. Design: Longitudinal qualitative study. Methods: Participants were purposively sampled to represent differing geographical locations, specialities, settings and redeployment experiences. They were interviewed (remotely) between July 2020 and April 2022 using a semi-structured interview topic guide. Results: Three key themes were identified inductively from our analysis including: (1) Under threat: The ability to speak up or not; (2) Risk tolerance and avoidance: Consequences of speaking up; and (3) Deafness and hostility: Responses to speaking up. Nurses reported that their attempts to speak up typically focused on PPE, patient safety and redeployment. Findings indicate that when NHS Trusts and community services initiated their pandemic response policies, nurses' opportunities to speak up were frequently thwarted. Conclusion: Accounts presented in this article include nurses' feeling a sense of futility or of suffering in silence in relation to speaking up. Nurses also fear the consequences of speaking up. Those who did speak up encountered a ‘deaf’ or hostile response, leaving nurses feeling disregarded by their organization. This points to missed opportunities to learn from those on the front line. Impact: Speaking up interventions need to focus on enhancing the skills to both speak up, and respond appropriately, particularly when power, hierarchy, fear and threat might be concerned. Patient or Public Contribution: Nurses working clinically during COVID-19 were involved in the development of this study. Participants were also involved in the development of our interview topic guide and comments obtained from the initial survey helped to shape the study design.

Inflammatory Bowel Disease (IBD) affects patients and their family members, but most reviews have focused only on patients themselves. This review synthesises evidence on the impact of IBD on family members.A systematic review was undertaken, searching six bibliographic databases, focusing on the impact of IBD on family members, coping strategies, and interventions. A narrative synthesis was conducted. This review was reported following the Preferred Reporting Items for Systematic Reviews (PRISMA).3258 records were identified; 33 papers (2748 participants) were included. Three themes were identified: impact of IBD on family members; coping strategies for family members to overcome the impact of IBD; and the support needed by family members. IBD affects family members' well-being in many ways, including their emotional well-being, relationship with the patient, social life, work and finances, and leisure time and travel. Family members use adaptive coping patterns such as acceptance, developing resilience, and emotional support from others. Maladaptive coping patterns such as denial of diagnosis, self-distraction, and self-blame were also evident. Family members reported that they needed better information about IBD, support groups, and better access to a counsellor or psychologist. No studies assessed interventions to relieve family members' burden.Family members of IBD patients require psychosocial support to facilitate better family function, cohesion, and enhanced coping strategies. Healthcare services should adopt a multidisciplinary care model with a bio-psycho-social approach including an IBD nurse, family therapist, and psychologist, to improve quality of life for patients and their families.

Treatment options for glioblastoma (GBM) are limited. Prognosis remains dismal, with an 18 month on average survival rate following diagnosis due to treatment resistance and disease recurrence. The goal of this project is to investigate hallmarks of cancer progression that contribute to temozolomide (TMZ) resistance, a first tine treatment for GBM. Two signaling pathways were investigated in TMZ-sensitive and -resistant GBM cell lines and in primary and recurrent patient-derived xenograft (PDX) tumor cells by genetically and pharmacologically inhibiting methionine adenosyltransferase 2A (MAT2A) and adenosylhomocysteinase (AHCY). Cell growth and survival were assessed by measuring protein expression of proliferation, oxidative stress and cell cycle arrest markers. EPIC array analysis and targeted bisulfite sequencing were conducted to identify changes in genome-wide and specific CpG island methylation. The Seahorse XF Analyzer measured mitochondrial respiratory capacity and oxidative metabolism. Induced pluripotent stem cell organoids were co-cultured with PDX tumor cells to determine if treatments mitigate tumor cell invasiveness. Compared to parental cells (PC), MAT2A gene expression was increased by 1.7-fold in acquired resistant and de novo resistant GBM cells (RC) [(transcript per million): PC, 7386 ± 412; RC, 12941 ± 1023; n=2; p=2.10e-8].Compared to TMZ-sensitive cells (TS), TMZ-resistant cells (TR) demonstrated a 56% increase in baseline oxygen consumption rate [(pmol/min): TS, 179 ± 6.7; TR, 279 ± 13; n=18; p=.0012] and 64% increase in maximal respiratory capacity [(pmol/min): TS, 403 ± 29; TR, 659 ± 35; n=6; p MAT2A and AHCY contribute to TMZ resistance and recurrence by dysregulating methylation programs and upregulating antioxidant programs, respectively. These findings provide a foundation for developing novel combinatory therapeutic strategies and inform clinical studies intended to augment the practically negligible rate of remission for GBM and improve treatment outcomes for cancer patients. Citation Format: Emma Rowland, Jordan Walter, Anna Jermakowicz, Robert Suter, Rebecca Riggins, Nagi Ayad. Targeting metabolic and epigenetic programs to re-sensitize glioblastoma to chemotherapy [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 1747.

Aims Around 15% of patients at clinical high risk for psychosis (CHR-P) experience symptomatic remission and functional recovery at follow-up, yet the definition of a good outcome (GO) in this population requires further development. Outcomes are typically designed and rated by clinicians rather than patients, to measure adverse as opposed to GOs. Here we investigate how CHR-P subjects define a GO, with the aim of developing a checklist that could be used to measure GO in this clinical group. Methods A set of GO-focused questions were designed in collaboration with a service-user. CHR-P patients (n = 48) were asked to rate the importance of items that could indicate short-term (1 year) and long-term (5 years) GO. These items were then ranked using the relative importance index (RII). Results Patients rated improvement in subjective wellbeing (RII = 0.829) and non-specific presenting symptoms (RII = 0.817) amongst the factors most important for indicating GO in the short-term, and improved resilience (RII = 0.879) and negative symptoms (RII = 0.858) as key items for indicating long-term GO. Patients regarded building resilience (RII = 0.842) and having support from mental health services (RII = 0.833) as being protective for their mental health. These measures were included in a preliminary 12-item GO checklist (GO-12) for assessing GO in CHR-P subjects. Conclusions Patient-defined measures of GO included items that are not incorporated into conventional measures of outcomes in CHR-P subjects, such as subjective wellbeing and resilience. Integrating patient-defined metrics of GO may improve the assessment of outcomes in the CHR-P population.

Funding Acknowledgements National Institute for Health Research OnBehalf King"s Health Partners Patient & Public Involvement for Inherited Cardiac Conditions (PPIICC) group Background Inherited Cardiac Conditions (ICCs) affect up to 1:200 of the population and is the leading cause of sudden death in the under 40s. Research into developing interventions to support patients as they adjust to their diagnosis and genetic carrier status is underway; an example of which is the Psychoeducational Intervention Supporting patients with an ICC (PISICC) study. To ensure the appropriateness, acceptability and applicability of the intervention, patients and the public were involved in the development of PISICC intervention. Purpose To ensure the relevance and improve the quality of the PISICC study, Patient & Public Involvement for Inherited Cardiac Conditions (PPIICC) group was organised to guide the research project as this progressed through the three phases of the Medical Research Council framework for developing complex interventions. Methods Utilising INVOLVE guidelines, the PPIICC group was initiated by the researcher by inviting patients and families attending a local ICC clinic, members of the patient support group, Cardiomyopathy UK; and members of the existing PPI group of the local biomedical research centre. Ground rules, terms of engagement and provisions for meetings such as rooms, reimbursements for transport costs, childcare and compensation for time was established. The PPIICC group met up to three times per year within a three-year period with electronic exchanges in between. Members gave individual feedback to draft study materials and their views shaped the final versions. A modified Delphi study was used for the development of the PISICC intervention model. Figure 1 illustrates the activities undertaken by the group. Results The involvement of the PPIICC group throughout the development of the PISICC intervention model has contributed to the successful recruitment of 32 participants and completion of the qualitative study in Phase 1. In Phase 2 the group had a crucial role in ensuring that the education component of the PISICC intervention included advice on medication and physical activity; and for the group component of the intervention to include a mixed age group to enable sharing of varied experiences. In planning for Phase 3, the PPIICC group helped ensure that the trial processes for the planned feasibility study were not burdensome to participants which supported its full ethical approval by the UK Health Research Authority. Conclusions Patients and their families played an important role in designing the PISICC study. So far, their involvement has resulted in reaching recruitment targets for Phase 1 of the study, the development of a patient-informed psychoeducational intervention model and feasibility study protocol.

Background Outcomes in people at clinical high risk for psychosis (CHR P) have usually been defined in terms of psychosis onset. However, within the subgroup of individuals who do not develop psychosis, some have persistent symptoms; while in others, symptoms resolve and functioning is restored. Currently, little is known about what predicts a good outcome (GO) in CHR-P individuals, partly because there is no consensus on how this should be defined. Method The Delphi method was used to elicit the opinions of 46 experts to reach a consensus on factors that together could define GO in the CHR-P population. Three online surveys were implemented. The panel rated each survey item according to how important they thought it was as a measure of GO. Participants also answered open-ended questions on how GO should be determined, their responses were subject to content analysis. Results Ninety-eight items were endorsed by 80% of the panel as essential or important for a GO; these fell into 4 domains: Functioning; Symptoms; Distress/Suicidality; and Subjective Wellbeing. The individual item that was rated as the most important, was daily functioning. Themes emerged from the qualitative data, which corresponded to the Delphi domains, including ‘functioning’; ‘clinical factors; and ‘user-defined outcomes'. Conclusions A GO in CHR-P subjects can be defined by using a combination of measures from domains that reflect level of functioning; symptoms; distress/suicidality; and subjective wellbeing. These results provide a basis for a standardised definition of good outcome in people at clinical high risk of psychosis.

This chapter explores the potential for a more integrated and central geographical contribution to mainstream professional practice debates. As an example it describes how geography might play a fuller and more embedded role in understandings of ‘person-centred care’ (PCC). After reviewing traditional research areas on PCC, it describes how PCC might be understood as a ‘more-than–human’ spatial production. Specifically it describes how a posthumanist theoretical orientation might recast some humanistic concepts central in PCC (identity and meaning, emotions, difference and oppression, agency and communication). Then, using a three-part posthumanist typology, it considers how PCC might; (1) emerge and express within material social assemblages; (2) be enacted and performed affectively by vital bodies and vibrant objects; (3) be conducted in immediate, pre-personal, more-than-representational spacetimes.

This chapter is a case study based on Emma Rowland’s original empirical work that showcases some contemporary geographies in professional practice. It presents data derived from ethnographic observations in four hospital wards and interviews with professionals working in them in multiple work roles. The aim is to articulate the character and function of ‘emotional geographies’ in hospital-based/ward work. Emerging themes include geographies of: emotional detachment, contested emotion, emotional attachment, emotional containment, and communicating emotions.

This chapter is a case study based on Emma Rowland’s original empirical work that showcases some contemporary geographies in professional practice. It presents data derived from ethnographic observations of ambulance work and interviews with ambulance crew; the aim being to describe the nature and impact of particular spaces on this form of work including ambulance stations, mobile workspaces, public spaces and private spaces. Across these spaces, a number of experiences are mapped including, frustrations, stresses, coping strategies, gendered dimensions, and bodily agency. Indeed, this chapter uncovers issues related to professional health care work across non-traditional community spaces.

This chapter explores how geographical ideas have been central to thinking and acting in caring practice over many centuries in many places. This includes in forms of caring in prehistoric times; in the earliest origins of ancient Chinese and Indian medicine; in the health ideas of ancient Greek writers; in medicine in the age of European exploration; in the nineteenth century origins of public health practice; in the work of Florence Nightingale, and in mid-twentieth century nursing theory. The chapter then explores how these historical strands have reached fruition in the current era with contemporary practice and in research concepts such as ‘work environment’, ‘clinical environment’, ‘environmental health’, ‘lifeworlds’ and in broader movements such as environmentalism. The chapter sets the scene historically for the ones that follow it in the book.

This chapter explores the potential for a more integrated and central geographical contribution to mainstream professional practice debates. As an example is describes how geography might play a fuller and more embedded role in understandings of ‘skills’. After briefly reviewing traditional approaches to studying and understanding skill in health professional research, the chapter takes principles of non-representational theory and proposes some ways forward for future research through a deeper ontological understanding of skill and its processual, spatial emergence (summarised in the term ‘skilling space’). Finally, at the end of this last chapter attention given to the broader future geographical research agenda on health care work.

This chapter reviews the contemporary geographical study of health care work. Initially it examines key ‘on the ground’ transformations in health and health care which are fundamentally geographical in their making, form and consequences; transformations which have demanded a geographical research perspective be taken as well-aligned vantage point with which to report and understand them. These include increasing spatial diffusion of health professionals and roles; the transition of health care settings; the role of technologies in overcoming spatial limitations; the increasing emphasis on community and the social model of health; the embeddedness of geographical scales and concepts in policy and administration, and the globalization of work roles and responsibilities. The chapter then moves on to examine how a number of academic developments—including in medical/health geography—have at the same time coalesced to provide an additional set of motivations and opportunities for geographical scholarship on health care work. Finally, it describes the main theoretical traditions and approaches which have constituted ‘geographies of health care work’ as a current multidisciplinary academic enterprise and field—including spatial science, political economy, social constructionist/humanist, and most recently non-representational theory, providing examples of recent empirical research which has been framed by each.

Emergency medicine is a growing specialty and as hospital services become increasingly centralised, emergency physicians are expected to perform several rare, time-critical procedures if speciality teams are unavailable. The Royal College of Emergency Medicine curriculum highlights these procedures and, given their low incidence, recommends that simulation is used as a way to develop the skills. In development of this course there were 4 key curriculum areas identified that were not being covered on mandatory courses: Major maxillofacial trauma Obstetric cardiac arrest and neonatal resuscitation Can’t intubate, can’t oxygenate Traumatic cardiac arrest At the time of writing, the only courses that tried to address these topics were skills based cadaveric courses and, while they may aid the technical skills training, they do not address the human factor elements of these complex cases. Likewise, these courses have limited appeal to nursing staff however nursing familiarity and input in these situations is key to optimal management. The RIPS course was developed to address these issues. Educational theory was used to develop the course structure. A course handbook was developed with multi-speciality input with a focus on simplifying the procedures to the key steps. On the day, an initial lecture introduces human factors with a focus on critical decision making. These concepts are given context and are interleaved into subsequent debriefs. The candidates are split into multidisciplinary teams for the scenarios which utilised customised simulation models to increase fidelity. Debriefs were followed by workshops on the specific procedural steps and allowed time for deliberate practice and feedback. A pilot course was run in 2018. Participants showed statistically significant increases in confidence in all areas. Qualitative feedback highlighted the benefits of having both doctors and nurses and a focus on human factor elements during debriefs. There were suggested improvements around the timing and structure of the course which have been developed and incorporated allowing more time to focus on the area’s participants found most beneficial. This year, four RIPS courses have been organised and are fully booked by 60 candidates with an extensive waiting list. By November we will be able to present the feedback from these days and hope to be able to discuss the development of additional faculty with plans to run this course in additional centres. References RCEM, Curriculumand Assessment Systems for Training in Emergency Medicine, 2015, https://www.rcem.ac.uk/docs/Training/RCEM_2015_Curriculum___Applicable_from_August_2016__approved_23_Nov_2015_ATCF_RTT_DRE-EM_additions_July2017%20-%20JCST%20amendments.pdf, accessed May 2019

Over the last 30 years, nuclear receptors (NRs) have been increasingly recognized as key modulators of systemic homeostasis and as contributing factors in many diseases. In the kidney, NRs play numerous important roles in maintaining homeostasis—many of which continue to be unraveled. As “master regulators”, these important transcription factors integrate and coordinate many renal processes such as circadian responses, lipid metabolism, fatty acid oxidation, glucose handling, and inflammatory responses. The use of recently-developed genetic tools and small molecule modulators have allowed for detailed studies of how renal NRs contribute to kidney homeostasis. Importantly, while NRs are intimately involved in proper kidney function, they are also implicated in a variety of renal diseases such as diabetes, acute kidney injury, and other conditions such as aging. In the last 10 years, our understanding of renal disease etiology and progression has been greatly shaped by knowledge regarding how NRs are dysregulated in these conditions. Importantly, NRs have also become attractive therapeutic targets for attenuation of renal diseases, and their modulation for this purpose has been the subject of intense investigation. Here, we review the role in health and disease of six key renal NRs including the peroxisome proliferator-activated receptors (PPAR), estrogen-related receptors (ERR), the farnesoid X receptors (FXR), estrogen receptors (ER), liver X receptors (LXR), and vitamin D receptors (VDR) with an emphasis on recent findings over the last decade. These NRs have generated a wealth of data over the last 10 years that demonstrate their crucial role in maintaining normal renal homeostasis as well as their capacity to modulate disease progression.

IMPACT: This work may lead to new treatments for crystalline nephropathies. OBJECTIVES/GOALS: This study investigated obeticholic acid (OCALIVA ®) as a potential treatment for 2,8-dihydroxyadenine (2,8-DHA) nephropathy using a mouse model. The treatment was investigated in both sexes at two timepoints. METHODS/STUDY POPULATION: Male and female C57BL/6J mice (12 weeks of age) were fed chow (Research Diets D19120401i) or chow admixed with adenine (0.2% w/w) ad lib for either 3.5 or 7 weeks. Mice were treated with either vehicle (corn oil) or obeticholic acid (10 mg/kg BW) by gavage 5 days per week. Each of the 16 combinations of sex/diet/timepoint/treatment groups had an n = 6 (96 mice in total). Food and body weights were measured twice per week, and 24-hour urines were collected prior to euthanasia. Serum and organs were collected and processed for biochemical and histopathological analyses. RESULTS/ANTICIPATED RESULTS: At both the 3.5-week and 7-week timepoints, dietary adenine robustly increased BUN and serum creatinine compared to control diet in vehicle-treated male and female mice (P < .01, all comparisons). At the 3.5-week timepoint, obeticholic acid reduced BUN in male (P < .05) but not female adenine mice. Obeticholic acid did not affect serum creatinine at this timepoint. At the 7-week timepoint, obeticholic acid reduced BUN in female (P < .05) but not male adenine mice. At the 7-week timepoint, obeticholic acid reduced serum creatinine in both male (P < .05) and female (P < .01) mice. Biochemical and histopathological analyses are ongoing, and we anticipate that the results will agree with the serum chemistries. DISCUSSION/SIGNIFICANCE OF FINDINGS: Obeticholic acid is FDA-approved for primary biliary cholangitis, and it is in clinical trials for several other hepatobiliary diseases. Although currently untested in humans, it is nephroprotective in many preclinical models of kidney disease. This study is the first to investigate obeticholic acid in a model of crystalline nephropathy.

Background: Clinical handover plays a vital role in patient care and has been investigated in hospital settings, but less attention has been paid to the interface between prehospital and hospital settings. This paper reviews the published research on these handovers. Methods: A computerised literature search was conducted for papers published between 2000 and 2013 using combinations of terms: ‘handover’, ‘handoff’, ‘prehospital’, ‘ambulance’, ‘paramedic’ and ‘emergency’ and citation searching. Papers were assessed and included if determined to be at least moderate quality with a primary focus on prehospital to hospital handover. Findings: 401 studies were identified, of which 21 met our inclusion criteria. These revealed concerns about communication and information transfer, and themes concerning context, environment and interprofessional relationships. It is clear that handover exchanges are complicated by chaotic and noisy environments, lack of time and resources. Poor communication is linked to behaviours such as not listening, mistrust and misunderstandings between staff. While standardisation is offered as a solution, notably in terms of the use of mnemonics (alphabetical memory aids), evidence for benefit appears inconclusive. Conclusions: This review raises concerns about handovers at the interface between prehospital and hospital settings. The quality of existing research in this area is relatively poor and further high-quality research is required to understand this important part of emergency care. We need to understand the complexity of handover better to grasp the challenges of context and interprofessional relationships before we reach for tools and techniques to standardise part of the handover process.

Objective To explore men's experiences of their partner's altered physique and body image as a result of mastectomy and subsequent reconstructive surgeries. Design A systematic review of qualitative and mixed-methods studies. Data sources Ovid, EBSCOhost, Web of science, SCOPUS and ASSIA ProQuest databases were searched using 1) truncations of breast cancer, hereditary breast cancer and BRCA 2) words relating to partner relationships; spouse, husband, partner, men and couple 3) breast cancer surgeries; mastectomy, prophylactic mastectomy and breast reconstruction and 4) body image. Review method Methodological rigour was quality assessed. Results A total of 756 citations were retrieved. Seventeen articles remained following the removal of duplicates, papers unrelated to breast cancer, male breast cancer, papers that excluded men's experiences of their partner's breast cancer and altered body image. Thematic analysis was applied and produced five themes: experiences of the altered body, communication, impact on relationship, information giving and recommendations. Conclusion Men indicated that perceptions of their partner's altered physique and body image, following mastectomy, was secondary to their health. Some men were distressed by their partner's bodily alterations leading to highly complex and emotive coping mechanisms. Men found talking to their partner about physique and body image challenging. Closed communication, however, often led to conflict and poor psychological well-being in both partners. To help prepare for the changes to their partner's body, men desired tailored information. Effective information giving contributes to effective coping strategies helping men to better support their partner affected or at risk from breast cancer, leading to enhanced psychological and emotional well-being in couples.

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors’ professional development.

PURPOSE: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure might affect their child's future decision-making. METHOD: This study explored the communication of genetic risk information in families using qualitative semi-structured interviews conducted with parents, children (7-11years) and young people (12-18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded transcripts producing four themes; family communication, perception of cancer risks, risk management strategies and impact of genetic risk communication in children and young people's decision making. RESULTS: Twenty-seven individuals from 11 families took part, recruited through purposive sampling techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their children's future. As a result, parents with hereditary breast cancer disclosed limited information about the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery on body image. This had implications to children and young people's perceptions of prophylactic procedures, which were already influenced by cultural understandings of the 'desirable body' and increasing acceptance and proliferation cosmetic surgery. CONCLUSION: Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people's understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.

Qualitative researchers cannot rely on research ethics to be a static practice. In this article we discuss how observation of guidelines for inquiry and international agreements on the dignity of health care research are not sufficient on their own to ensure that the challenges inherent in the everyday management of a project are regulated. We focus in particular on ethics in accessing participants and the construction of informed consent. During our study, important contrasts emerged between the ideal presented for the standard ethics review process and practical ethics. As a result, we focused on building open communication with the participants through rigorous project management. We analyzed the data and wrote this article collaboratively to represent the empirical reality of a team of researchers aiming to take ethical challenges seriously while collecting data in three National Health Service Trusts in the United Kingdom.

Background Long-term outcomes for individuals at risk of developing psychosis are heterogeneous; some develop a psychotic disorder, others continue to experience attenuated psychotic symptoms (APS) and some experience clinical remission and functional recovery. Existing UHR literature is primarily vulnerability- and disease-focused. In recent years, there has been a gradual shift in research to focus on more favourable outcomes, yet despite positive findings, very few UHR studies have directly investigated or even reported good outcomes in this population. Perhaps one major obstacle for this research is the lack of a sound definition of what constitutes a ‘good’ outcome for UHR individuals. The current study uses the Delphi method to systematically reach a consensus definition, amongst UHR clinical and research experts, of good outcome in this clinical population. To our knowledge, this is the first UHR-focused study to utilize the Delphi method. Methods A three-round online Delphi study was conducted and n=135 UHR-expert clinicians and researchers drawn from multiple continents were invited to take part. In Round 1, participants were asked to: i) select from a list of items those which they considered most important to the definition of good outcome in UHR and ii) make suggestions on ways in which good outcome could be determined in a standardised way. In Round 2, participants were asked rate the importance of each item to good outcome in UHR individuals, on a 5-point Likert scale. According to the proportion of participants who rated the items as ‘essential’ or ‘important’, items were: i) accepted as part of the consensus and included as a standard if rated by ≥80% or more of the group, ii) re-introduced in the third round and participants were given the opportunity to re-rate them if rated by between 50–79% of the group or iii) excluded if rated by less than 50% of participants. Results Forty-six (34.1%) participants responded to the first round of the Delphi process, 39 (84.7% retention rate) responded to Round 2, and 30 (76.9% retention rate) to Round 3. Of the 46 UHR-experts, 20 were psychiatrists, 17 were psychologists, 8 were researchers/lecturers and 1 was a social worker. Fifteen items were endorsed by ≥80% of the expert-participants as ‘essential’ or ‘important’ for defining UHR-specific good outcome at one-year follow-up. Items fell into one of the following categories: functioning, symptoms, other clinically relevant factors or personal wellbeing. ‘Daily functional capacity’ and and ‘self-reported improvement in mental health’ were rated as ‘essential’ to defining good outcome for an UHR individual at one-year, by 100% of the Delphi sample. A reduction in the distress associated with APS was deemed ‘important’ by 92.1% of the sample, more so than the complete remission of APS. Many similar items were rated with the same level of endorsement for the question on outcome at five-year follow-up. Twenty-one protective factors reached ≥80% endorsement for being essential or important for good outcome in UHR individuals and fell into at least one of the following categories: community support; mental health services support; cognitive factors; personal wellbeing; social network/support; substance use/abuse; daily living factors; and premorbid factors. Discussion This three-phase Delphi study achieved consensus on the core features of good outcome at one-year and five-years in the UHR population. The items that form this definition could be used in future research and clinically, to evaluate treatment and outcome of UHR individuals. They can also be of value to the development of intervention frameworks. Further studies involving other stakeholder groups, particularly individuals considered to be at risk of developing psychosis, are needed.

To explore men's experiences of their partner's altered physique and body image as a result of mastectomy and subsequent reconstructive surgeries.A systematic review of qualitative and mixed-methods studies.Ovid, EBSCOhost, Web of Science, SCOPUS and ASSIA ProQuest databases were searched using 1) truncations of breast cancer, hereditary breast cancer and BRCA 2) words relating to partner relationships; spouse, husband, partner, men and couple 3) breast cancer surgeries; mastectomy, prophylactic mastectomy and breast reconstruction and 4) body image.Methodological rigour was quality assessed.A total of 756 citations were retrieved. Seventeen articles remained following the removal of duplicates, papers unrelated to breast cancer, male breast cancer, papers that excluded men's experiences of their partner's breast cancer and altered body image. Thematic analysis was applied and produced five themes: experiences of the altered body, communication, impact on relationship, information giving and recommendations.Men indicated that perceptions of their partner's altered physique and body image, following mastectomy, was secondary to their health. Some men were distressed by their partner's bodily alterations leading to highly complex and emotive coping mechanisms. Men found talking to their partner about physique and body image challenging. Closed communication, however, often led to conflict and poor psychological well-being in both partners. To help prepare for the changes to their partner's body, men desired tailored information. Effective information giving contributes to effective coping strategies helping men to better support their partner affected or at risk from breast cancer, leading to enhanced psychological and emotional well-being in couples.

Objectives: Communicating genetic risk is a distressing process for families affected by inherited genetic conditions. This systematic review identifies and explores the challenges faced by parents and their (non)affected or at risk children caused by the (non)disclosure of genetic risk information. Design: Qualitative meta-synthesis and thematic analysis. Data sources: Ovid databases; Ovid 'in progress', British Nursing Index, Embase, Medline and Psychinfo were combined with searches of EBSCOhost databases; CINAHL and ERIC and Web of science and ZETOC databases using truncations of communication, chronic illness and disease and words relating to family with specific genetic conditions; Cystic Fibrosis, Duchenne Muscular Dystrophy, Familial Adenomatous Polyposis, Hereditary Non-polyposis Colorectal Cancer, Huntington's Disease, Neurofibromatosis and Sickle Cell Anaemia. This was augmented with free Internet and hand searches and an exploration of the bibliographies of all included papers. Review method: All papers were quality assessed to ascertain their research quality and methodological rigour. Results: A total of 2033 citations were retrieved. Following the removal of duplicates, irrelevant articles and the application of an inclusion criterion, 12 articles remained. A further three papers were omitted due to poor quality leaving nine papers which focussed on the disclosure of genetic information between parent and child (Conclusion: Disclosure of genetic risk information within families is a highly complex and affective process often resulting in delayed disclosure. This can lead to increased family tensions generated by misunderstanding, blame and secrecy. Early, age appropriate disclosure can better prepare children for future considerations such as care planning and reproductive decision-making. It also contributes to effective coping strategies that promote enhanced adaptation and emotional well being. Early disclosure also reduces parental anxieties concerning disclosure from an unwitting source. Research shows that children and young people want their parents to engage in open and honest discussions about the genetic condition. Therefore to help facilitate effective family communication health professionals should provide family centred care and better emotional and informational support.