72 research outputs found

    Child sexual abuse and social identity loss: a qualitative analysis of survivors' public accounts

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    Emerging evidence suggests that social identities are an important determinant of adaptation following traumatic life experiences. In this paper we analyse accounts of people who experienced child sexual abuse. Using publicly available talk of people who waived their right to anonymity following successful conviction of perpetrators, we conducted a thematic analysis focusing on trauma related changes in their social identities. Analysis of these accounts highlighted two themes. The first highlights the acquisition in these accounts of unwanted and damaging identity labels. The second presents child sexual abuse as a key destructive force in terms of important identity work during childhood. Discussion of this analysis centres on the pathological consequences of social identity change. Both the loss of valued identities and the acquisition of aberrant and isolating identities are experienced and constructed as devastating by those affected by child sexual abuse. This has important implications, not only for those impacted by child sexual abuse, but for how abuse is discussed in society, and how it is approached by policy makers, educators and individuals working with survivors and their families

    Sexual violence and traumatic identity change: evidence of collective post-traumatic growth

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    Recent research indicates that social identities play a crucial role in the connection between adversity, post-traumatic stress, and overall psychological well-being. Understanding of how trauma influences collective dimensions of the self, positively or negatively, is limited. This study focuses on analysing publicly accessible narratives of four women who chose to waive their anonymity after the conviction of the men who had attacked and sexually assaulted them in Ireland. Thematic analysis highlighted two themes that signal (i) collective dimensions to this personal trauma, (ii) attempts to reconstruct social identities in the aftermath of trauma. Women presented their experiences as having the potential to amplify positive connections with others despite the wider embedded sociocultural understanding of sexual assault. These changes were associated with redefinition of social identities. Discussion highlights the potential for personal and intimate trauma to result in positive social identity change; a phenomenon that we label collective post-traumatic growth

    Effectiveness of the internet-based Unified Protocol transdiagnostic intervention for the treatment of depression, anxiety and related disorders in a primary care setting: a randomized controlled trial

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    Background Research has shown that internet-based cognitive behavioural therapy (iCBT) can be a very promising solution to increase access to and the dissemination of evidence-based treatments to all of the population in need. However, iCBT is still underutilized in clinical contexts, such as primary care. In order to achieve the effective implementation of these protocols, more studies in ecological settings are needed. The Unified Protocol (UP) is a transdiagnostic CBT protocol for the treatment of emotional disorders, which includes depression, anxiety and related disorders, that has shown its efficacy across different contexts and populations. An internet-based UP (iUP) programme has recently been developed as an emerging internet-based treatment for emotional disorders. However, the internet-delivered version of the UP (iUP) has not yet been examined empirically. The current project seeks to analyse the effectiveness of the iUP as a treatment for depression, anxiety and related emotional disorders in a primary care public health setting. Methods The current study will employ a parallel-group, randomized controlled trial design. Participants will be randomly assigned to (a) the internet-based Unified Protocol (iUP), or (b) enhanced waiting list control (eWLC). Randomization will follow a 2:1 allocation ratio, with sample size calculations suggesting a required sample of 120 (iUP=80; eWLC=40). The Mini-International Neuropsychiatric Interview (M.I.N.I.) will be used for assessing potential participants. The Overall Anxiety Severity and Impairment Scale (OASIS) and the Overall Depression Severity and Impairment Scale (ODSIS) as well as other standardized questionnaires will be used for assessments at baseline, 4 weeks, 8 weeks and 12 weeks from baseline and for the iUP condition during the follow-up. Discussion Combining the advantages of a transdiagnostic treatment with an online delivery format may have the potential to significantly lower the burden of emotional disorders in public health primary care setting. Anxiety and depression, often comorbid, are the most prevalent psychological disorders in primary care. Because the iUP allows for the treatment of different disorders and comorbidity, this treatment could represent an adequate choice for patients that demand mental health care in a primary care setting

    Combined approaches, including long-read sequencing, address the diagnostic challenge of HYDIN in primary ciliary dyskinesia

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    Primary ciliary dyskinesia (PCD), a disorder of the motile cilia, is now recognised as an underdiagnosed cause of bronchiectasis. Accurate PCD diagnosis comprises clinical assessment, analysis of cilia and the identification of biallelic variants in one of 50 known PCD-related genes, including HYDIN. HYDIN-related PCD is underdiagnosed due to the presence of a pseudogene, HYDIN2, with 98% sequence homology to HYDIN. This presents a significant challenge for Short-Read Next Generation Sequencing (SR-NGS) and analysis, and many diagnostic PCD gene panels do not include HYDIN. We have used a combined approach of SR-NGS with bioinformatic masking of HYDIN2, and state-of-the-art long-read Nanopore sequencing (LR_NGS), together with analysis of respiratory cilia including transmission electron microscopy and immunofluorescence to address the underdiagnosis of HYDIN as a cause of PCD. Bioinformatic masking of HYDIN2 after SR-NGS facilitated the detection of biallelic HYDIN variants in 15 of 437 families, but compromised the detection of copy number variants. Supplementing testing with LR-NGS detected HYDIN deletions in 2 families, where SR-NGS had detected a single heterozygous HYDIN variant. LR-NGS was also able to confirm true homozygosity in 2 families when parental testing was not possible. Utilising a combined genomic diagnostic approach, biallelic HYDIN variants were detected in 17 families from 242 genetically confirmed PCD cases, comprising 7% of our PCD cohort. This represents the largest reported HYDIN cohort to date and highlights previous underdiagnosis of HYDIN-associated PCD. Moreover this provides further evidence for the utility of LR-NGS in diagnostic testing, particularly for regions of high genomic complexity.</p

    Abiraterone in Metastatic Prostate Cancer without Previous Chemotherapy

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    BackgroundAbiraterone acetate, an androgen biosynthesis inhibitor, improves overall survival in patients with metastatic castration-resistant prostate cancer after chemotherapy. We evaluated this agent in patients who had not received previous chemotherapy.MethodsIn this double-blind study, we randomly assigned 1088 patients to receive abiraterone acetate (1000 mg) plus prednisone (5 mg twice daily) or placebo plus prednisone. The coprimary end points were radiographic progression-free survival and overall survival.ResultsThe study was unblinded after a planned interim analysis that was performed after 43% of the expected deaths had occurred. The median radiographic progression-free survival was 16.5 months with abiraterone-prednisone and 8.3 months with prednisone alone (hazard ratio for abiraterone-prednisone vs. prednisone alone, 0.53; 95% confidence interval [CI], 0.45 to 0.62; P&lt;0.001). Over a median follow-up period of 22.2 months, overall survival was improved with abiraterone-prednisone (median not reached, vs. 27.2 months for prednisone alone; hazard ratio, 0.75; 95% CI, 0.61 to 0.93; P=0.01) but did not cross the efficacy boundary. Abiraterone-prednisone showed superiority over prednisone alone with respect to time to initiation of cytotoxic chemotherapy, opiate use for cancer-related pain, prostate-specific antigen progression, and decline in performance status. Grade 3 or 4 mineralocorticoid-related adverse events and abnormalities on liver-function testing were more common with abiraterone-prednisone.ConclusionsAbiraterone improved radiographic progression-free survival, showed a trend toward improved overall survival, and significantly delayed clinical decline and initiation of chemotherapy in patients with metastatic castration-resistant prostate cancer. (Funded by Janssen Research and Development, formerly Cougar Biotechnology; ClinicalTrials.gov number, NCT00887198.)

    UK robotic arthroplasty clinical and cost effectiveness randomised controlled trial for hips (RACER-Hip) : a study protocol

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    Introduction: The number of robotic-assisted hip replacement procedures has expanded globally with the intended aim of improving outcomes. Intraoperative robotic-arm systems add additional costs to total hip replacement (THR) surgery but may improve surgical precision and could contribute to diminished pain and improved function. Additionally, these systems may reduce the need for expensive revision surgery. Surgery with conventional instruments may be just as successful, quick and affordable. There is timely demand for a robust evaluation of this technology. Methods and analysis: The Robotic Arthroplasty Clinical and cost Effectiveness Randomised controlled trial for Hips (RACER-Hip) is a multicentre (minimum of six UK sites), participant–assessor blinded, randomised controlled trial. 378 participants with hip osteoarthritis requiring THR will be randomised (1:1) to receive robotic-assisted THR, or THR using conventional surgical instruments. The primary outcome is the Forgotten Joint Score at 12 months post-randomisation; a patient-reported outcome measure assessing participants’ awareness of their joint when undertaking daily activities. Secondary outcomes will be collected post-operatively (pain, blood loss and opioid usage) and at 3, 6, 12, 24 months, then 5 and 10 years postrandomisation (including function, pain, health-related quality of life, reoperations and satisfaction). Allocation concealment will be accomplished using a computer-based randomisation procedure on the day of surgery. Blinding methods include the use of sham incisions for marker clusters and blinded operation notes. The primary analysis will adhere to the intention-to-treat principle. Results will adhere to Consolidated Standards of Reporting Trials statements. Ethics and dissemination: The trial was approved by an ethics committee (Solihull Research Ethics Committee, 30 June 2021, IRAS: 295831). Participants will provide informed consent before agreeing to participate. Results will be disseminated using peer-reviewed journal publications, presentations at international conferences and through the use of social media. We will develop plans to disseminate to patients and public with our patient partners

    Experts by experience in mental health nursing education: What have we learned from the COMMUNE project?

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    The COMMUNE (co-produced mental health nursing education) was an international project established to embed EBE perspectives in mental health nursing education by developing and delivering a specific mental health nursing module. The underlying intention of this project was to go well beyond ad hoc implementation and tokenistic approaches to EBE involvement. Standards for co-production of Education (Mental Health Nursing) (SCo-PE [MHN]) was developed to provide guidance to the increasing number of academics seeking genuine and meaningful involvement of Experts by Experience in the education of health professionals. These standards were recently published in the Journal of Mental Health and Psychiatric Nursing (Horgan et al., 2020): https://onlinelibrary.wiley.com/doi/abs/10.1111/jpm.12605 and prompted this Editorial to discuss the COMMUNE project more fully, including the lessons learned

    Expert by Experience involvement in Mental Health Nursing Education: The co-production of standards between Experts by Experience and Academics in Mental Health Nursing

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    Introduction: Involving people with lived experience of mental distress in mental health nursing education has gained considerable traction yet broader implementation remains ad-hoc and tokenistic. Effective involvement requires curricula be informed by lived experience of service use. Aim: To develop standards to underpin expert by experience involvement in mental health nursing education based on lived experience of service use. Methods: Phase one used qualitative descriptive methods, involving focus groups with service users (n=50) from six countries to explore perceptions of service user involvement in mental health nursing education. Phase two utilised these findings through consensus building to co-produce standards to support Experts by Experience involvement in mental health nursing education. Results: Three themes emerged in Phase one: enablers and barriers, practical and informational support, and emotional and appraisal support. These themes underpinned development of the standards, which reflect nine processes: induction and orientation, external supervision, supportive teamwork, preparation for teaching and assessing, 'intervision', mutual mentorship, pre and post debriefing, role clarity and equitable payment. Conclusions: These standards form the framework entitled; Standards for Co-production of Education (Mental Health Nursing) (SCo-PE [MHN]). Implications for Practice The standards aim to support implementation of Expert by Experience roles in mental health nursing education

    Practice Guidelines for Co-Production of Mental Health Nursing Education

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    COMMUNE (Co-production of Mental Health Nursing Education) is an Erasmus+ Strategic Partnership Project based on the collaboration of experts by experience (EBE) and mental health nursing academics from six European universities and the University of Canberra in Australia. Its purpose was to advance the involvement of those who have experiences of mental health service use (EBE) in mental health nursing education. The project combined experiential and academic knowledge, with the aim of co-producing a module on ‘mental health recovery’ for undergraduate nursing students; a module that was taught to the students by EBE. Principles of co-production where followed as much as possible, involving EBE in all stages of the process, from grant application to dissemination. The project tried to move beyond typical service user involvement and towards co-creation of knowledge, where power differentials are acknowledged and equity issues addressed. Barriers to meeting these goals were experienced and will be discussed in this Guidelines. We hope that these Practice Guidelines will be useful for those who intend to co-produce learning programs or modules in mental health nursing and inspire others to follow similar paths and learn from our experiences, positive or otherwise. These Guidelines provide an overview of our experiences, learnings, limitations and barriers.The Commune team decided on the term ‘Expert by Experience’ (EBE) to describe the members of the team and other collaborators who has lived experience of mental distress. Other more commonly used terms are ‘service user’, ‘consumer’ and ‘people with mental illness.’ As not all experts by experience are mental health care users, and what constitutes an illness is highly debated, the team decided on a term that more correctly describes and value lived experience.Erasmus
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