Out of the Closet, but Not Out of the Woods: The Longitudinal Associations Between Identity Disclosure, Discrimination, and Nonsuicidal Self-Injury Among Sexual Minoritized Young Adults.

Sexual minoritized individuals engage in non-suicidal self-injury (NSSI) at higher rates than their heterosexual peers. Disclosing one's sexual minoritized identity can put one at risk for experiencing discrimination, which is linked to greater engagement in NSSI. However, discrimination has yet to be tested as a mechanism linking sexual identity disclosure to NSSI. Understanding how sexual identity disclosure impacts NSSI has the potential to inform interventions to reduce sexual orientation disparities in NSSI. To address this gap, the current study examined sexual orientation-based discrimination as a mediator of the longitudinal association between sexual identity disclosure and NSSI among 792 sexual minoritized young adults. Higher levels of disclosure at baseline were associated with greater likelihood of NSSI at two-month follow-up via greater discrimination at one-month follow-up, even after controlling for baseline levels of depression and demographic characteristics. The indirect effect became non-significant after controlling for previous levels of discrimination and NSSI. Findings provide partial support for the hypothesis that identity disclosure may precede exposure to discrimination and, in turn, engagement in NSSI. However, identity disclosure does not appear to predict acute increases in discrimination. Future research is encouraged to examine these prospective associations with longer intervals between assessments, as the indirect effect of identity disclosure on NSSI via discrimination may continue to accumulate over time. Findings highlight the need to reduce discrimination following sexual identity disclosure through the implementation of equitable and affirmative practices in school, healthcare, and other settings to improve the well-being of sexual minoritized young adults.

The social infertility cycle model.

Infertility poses an immense challenge to contemporary society. Around one in six people worldwide trying to conceive a child are facing infertility. This situation exists in an age of great technological developments where advances in medicine have made infertility treatment widely available and increasingly effective. In this article, a model will be presented that aims to explain the individual and social functioning of individuals and couples undergoing infertility treatment using assisted reproductive methods. The model was developed on the basis of a series of studies carried out by the author and colleagues during 2015-2021. The social infertility cycle model was proposed as the outcome of further research steps that were taken. The model takes into consideration the factors and behaviours of couples with infertility that determine the quality of their everyday functioning as well as the effectiveness of infertility treatment. The successive steps of the research process will be outlined in the article along with a presentation of the developed model.

Disclosure of HIV Status in Healthcare Settings: Practices and Considerations among Women Living with HIV/AIDS in Vietnam.

OBJECTIVE: This study investigated women living with HIV/AIDS (WLHA)'s practices and decision-making regarding disclosure of HIV status in healthcare settings in Vietnam. Introduction: Disclosure of HIV status in healthcare settings is under-studied. METHODS: We conducted in-depth interviews with 30 WLHA in Hanoi, Vietnam. Thematic analysis was conducted to investigate the patterns, considerations, and consequences of HIV disclosure. Results: Most participants chose a selective disclosure strategy based on the type of procedure and healthcare setting. They considered several factors: concerns about stigma/discrimination, risks of confidentiality breach, relevance to healthcare provision, and altruism towards protecting providers and other patients. Selective disclosure or non-disclosure often prevented participants from accessing comprehensive care. Conclusion: The study underscores the need to prepare WLHA to make informed decisions regarding disclosure and provide them with service navigations and support. It also highlights the necessity of reducing stigma and enhancing confidentiality protection to ensure safe disclosure in healthcare settings.

Telling Healthcare Providers About HIV Status: How Women with HIV/AIDS in Vietnam Decide and What They ConsiderThis study focuses on how women living with HIV/AIDS in Vietnam decide to share their HIV status with healthcare providers. We interviewed 30 women with HIV/AIDS in Vietnam and found that many choose to reveal their status only in certain situations, depending on the medical procedure and the setting. They weigh various factors before deciding to disclose, including the risk of facing stigma, the need to protect their privacy, how relevant their HIV status is to their other health issues, their wish to protect their healthcare providers and other patients, and how they have been advised by HIV specialists. Unfortunately, choosing not to disclose their status sometimes stops them from getting the full range of medical care they need. The findings stress the importance of helping these women make well-informed choices about disclosing their HIV status. We also need to provide them with additional support and navigational help through healthcare services. Moreover, reducing stigma in healthcare, enhancing providers' ability to gather necessary health information, and ensuring patient privacy are crucial to encouraging more open discussions of HIV status in medical settings.

Sharing Unpleasant Health Information with Patients: A baseline study exploring physician attitudes, practices and adherence to the SPIKES protocol at a tertiary hospital in Muscat, Oman.

Objectives: This study aimed to investigate the knowledge, attitude and experiences in sharing unpleasant health information and adherence to the SPIKES protocol among physicians at a tertiary hospital in Muscat, Oman. Methods: This cross-sectional study was conducted at the Sultan Qaboos University Hospital from August to October 2022. An electronic, self-administered questionnaire was used to gather data from physicians across various departments. Results: A total of 89 physicians completed the questionnaire (response rate = 22.3%). Most participants (n = 86, 96.6%) recognised the need for additional training in the delivery of unpleasant health information ('bad news'), with 78.7% (n = 70) expressing their willingness to undertake such training. Additionally, 32.6% (n = 29) reported negative experiences due to improper delivery of bad news, with an equal proportion admitting to disclosing bad news to patients' family without their consent. The majority (n = 77, 86.5%) demonstrated a high level of overall adherence to the SPIKES protocol, with 59.6-85.4%, 12.4-34.8% and 1.1-11.2% reported usually, sometimes and never following specific steps of the protocol, respectively. Marital status (P = 0.015) and qualifications (P = 0.032) were the only variables that were associated with adherence level, with married physicians and those with board and/or fellowship certificates reporting significantly better adherence compared to their counterparts. Conclusion: Physicians in Oman encounter challenges in delivering unpleasant health information, underscoring the interplay of cultural influences, training and adherence to protocols. To address these challenges, targeted and frequent training programmes are recommended, starting from undergraduate medical education and extending to continuous opportunities for physicians at various career levels.

Managing disclosure outcomes in intelligence interviews.

We introduce the disclosure-outcomes management model. The model views disclosure in intelligence interviews as a behaviour interviewees use to profitably navigate self-interest dilemmas. We theorized that interviewees compare the potential outcomes of disclosing to their self-interests. They evaluate the extent to which disclosure will facilitate or impede those self-interests: an interviewee's self-interest dilemma elicits cooperation with respect to some information but not other information. A Preliminary Study (N = 300) supported the model's predictions. We proposed a Replication Study (N = 369) to examine the model further. Participants assumed the role of an intelligence source undergoing an interview. They decided what information to disclose, contending the typical dilemma in an intelligence interview wherein disclosure could jeopardize or advance their self-interests. The results from the Preliminary and Replication studies were broadly in line with our proposition: perceived benefits positively influenced the likelihood of disclosing. However, a negative interaction between costs and benefits observed in the Preliminary Study did not replicate. That finding may be due to power constraints, not evidence against the existence of an interaction effect. Our proposal that-generally speaking-interviewees are likelier to disclose information units that seem less versus more risky requires further examination. Individual-level sensitivity to benefits, costs and their co-occurrence varied substantially in our studies. We discuss avenues for future research.

"He's used drugs - he's biased! He's not a drug user - what would he know!": A cross-sectional, online study of drug researchers' experiential knowledge of drug use and disclosure.

Introduction: Despite the recognized value of experiential knowledge, drug use and disclosure of drug use within the drug research community is rarely discussed or studied. Methods: We distributed a cross-sectional online survey using targeted recruitment. Researchers provided information on drug use, disclosure of use (or abstinence) professionally, and their impact via write-in text boxes. We used the general inductive approach to analyze the data. Results: Of the sample (n=669, 43 countries), 52 % were cisgender women, 89 % had post-graduate education, and 79 % worked in academia. Most (86 %) reported lifetime drug use and 47 % past 3-month use. Among 557 researchers who used drugs, 59 % disclosed their use to institutional colleagues, 59 % to colleagues outside their institution, 25 % to research participants, and 11 % in their research/scholarship. Themes included frequency; context; meaning of drug use disclosure personally, professionally, and socially; and how drug use experience and disclosure informs research. Respondents connected their concerns about disclosure in research with issues of social identity, professional risk, and the role of stigma related to lived experience. Some respondents felt that such concerns reinforce a vacuum, noting that the inability to disclose drug use limits research questions and the knowledge base overall. Discussion: Our findings support the dichotomy of thought surrounding the lived experience of drug use: "[They've] used drugs- [they're] biased!" and "[They're] not a drug user-what would [they] know!" Our findings provide an opportunity to reflect upon our positionality and the impact researchers' own drug use may have on the field.

Conceptual Model of and Intervention Development for Unplanned Suicide Attempts.

INTRODUCTION: More than half of those who die by suicide do not communicate about suicide prior to their death. This project describes the emotional state and decision-making among "unplanned" attempt survivors to inform a conceptual model and suicide prevention interventions. METHODS: This qualitative study purposefully sampled patients who reported having no suicidal thoughts on a standardized mental health questionnaire within 60 days (about 2 months) prior to a nonfatal suicide attempt documented in the health record. Participants verbally consented to telephone interview participation. Semistructured audio-recorded interviews elicited suicide attempt survivor descriptions of their emotional state and experiences in the days, hours, and minutes leading up to their suicide attempt. Interviews were transcribed and analyzed using grounded theory. The biopsychosocial theory of emotion regulation informed conceptual model development. RESULTS: Participants (N = 26) described 2 distinct "phases" prior to the attempt. First, a phase of increasing life stressors, transitory and nonspecific suicidal thoughts, and a reluctance to disclose experiences. Second, an overwhelming emotional state led to a sudden suicide attempt and nondisclosure due to the rapidity and intensity of the experience. These results informed the conceptual model and intervention development to manage unplanned and overwhelming urges to attempt suicide. DISCUSSION: Qualitative analysis informed the development of an intervention for the high-intensity "hot" period preceding an attempt, including specific steps to manage a highly intense emotional state in combination with overwhelming urges to kill oneself. CONCLUSION: Future research is needed to evaluate whether and how this intervention helps support people with a chance of "unplanned" suicide attempts.

Can semi-mandatory non-financial disclosure requirements drive firms to improve ESG performance - evidence from Chinese listed companies.

This study aims to reveal the impact of semi-mandatory non-financial disclosure requirements on corporate ESG performance and its mechanism. Utilizing the "comply or explain" semi-mandatory ESG disclosure requirement implemented by the Hong Kong Exchanges and Clearing Limited (HKEx) of China in 2016 as a quasi-experiment, and adopting the difference-in-differences identification strategy, this paper finds that semi-mandatory non-financial disclosure requirements can significantly enhance corporate ESG performance. Through mechanism analysis, it is found that semi-mandatory non-financial disclosure requirement promotes firms' ESG performance by suppressing the myopic behavior of corporate management and improving the quality of corporate internal control. Through heterogeneity analysis, it is found that semi-mandatory non-financial disclosure requirements have a greater effect on the ESG performance of firms with high institutional investor attention and non-polluting firms, and a smaller effect on firms with executives with overseas experience.

Family reaction to coming out (FRCO): A Spanish adaptation and validation of perceived parental reactions scale.

Family reactions to coming out can affect the mental health of individuals who disclose their sexual orientation or gender identity. Therefore, it is important to have an appropriate tool to assess them. The Perceived Parental Reactions Scale (PPRS) assessed perceived parental reactions to the disclosure of gay, lesbian, or bisexual sexual orientation by their children. We adapted the PPRS so that it can be answered by any individual belonging to a sexual or gender minority, and can be answered regarding any member of the family, not just parents. A total of 2627 individuals from Spain participated in this study, with a mean age of 31.59 (SD = 11.26). Participants completed the adapted PPRS questionnaire, now named the Family Reaction to Coming Out (FRCO). The FRCO assessed family reactions when disclosing their sexual orientation or gender identity. The majority of participants identified as cisgender men (47.5%) or cisgender women (44.9%), and as gay/lesbian (51.9%). A one-factor model emerged through exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). The FRCO displayed excellent internal consistency and demonstrated good levels of invariance for participants' gender (male vs female vs nonbinary gender), family member's gender (male vs female), and type of family member (parents vs other family member). Supporting convergent validity, the FRCO has shown a positive correlation with fear of family reaction to coming out. These findings support the validity and reliability of the FRCO tool in assessing the reactions of any family member within the Spanish context.

Online Child Sexual Exploitation and the Role of Computer-Mediated Communication: A Scoping Review.

The online landscape has shifted since the rise of smartphones and social media in the 2010s and altered the way children use technologies. Along with a reliance on computer-mediated communication (CMC) is the concern of online child sexual exploitation (OCSE). This scoping review provided an updated examination of the prevalence, risk factors, outcomes, and disclosures of OCSE since 2010. Systematic searches were conducted using three databases for studies published between January 2010 and January 2023. Results indicated an alarming prevalence of, and a wide range of risk factors and consequences associated with OCSE worldwide. Many young victims struggled to recognize OCSE as a serious form of abuse. The need to monitor the ever-changing Internet landscape for young users is highlighted.

Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time.

INTRODUCTION: We disclosed amyloid positron emission tomography (PET) results in individuals with subjective cognitive decline (SCD) and studied patient experiences and outcomes over a 6-month period. METHODS: Fifty-seven participants from the Subjective Cognitive Impairment Cohort (SCIENCe) (66 ± 8 years, 21 [37%] F, Mini-Mental State Examination 29 ± 1, 15 [26%] amyloid positive [A+]) completed questionnaires 1 week prior (T0), 1 day after (T1), and 6 months after amyloid PET disclosure (T2). Questionnaires addressed patient-reported experiences and outcomes. RESULTS: Independent of amyloid status, participants were satisfied with the consultation (scale 1-10; 7.9 ± 1.7) and information provided (scale 1-4; T1: 3.3 ± 0.9, T2: 3.2 ± 0.8). After 6 months, A+ participants reported more information needs (45% vs. 12%, p = 0.02). Independent of amyloid status, decision regret (scale 1-5; A+: 1.5 ± 0.9, A-: 1.4 ± 0.6, p = 0.53) and negative emotions (negative affect, uncertainty, anxiety) were low (all p > 0.15 and Pinteraction > 0.60). DISCUSSION: Participants with SCD valued amyloid PET disclosure positively, regardless of amyloid status. The need for information after 6 months, which was stronger in A+ individuals, underscores the importance of follow-up. HIGHLIGHTS: Participants with subjective cognitive decline (SCD) positively valued amyloid positron emission tomography (PET) disclosure. Participants with SCD experienced low levels of decision regret. We did not observe an increase in negative emotions. After 6 months, amyloid-positive individuals wanted more information.

Understanding employee experiences of developing younger onset dementia within the workplace: A scoping review.

BACKGROUND: There is limited information focussing on the perspectives of persons with younger onset dementia (YOD) in employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement. OBJECTIVE: The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD. METHODS: Records were included if they: considered working-aged persons who received a diagnosis of YOD whilst employed or soon after ceasing employment; considered the perspective of the person with YOD; and were published in English. Four databases (CINAHL, PubMed, Embase, Cochrane Library) were systematically searched, and grey literature was sought using the Google Scholar search engine. Using PRISMA-ScR guidelines, two reviewers screened the title/abstract then full text of identified documents. Disagreements were resolved with a third reviewer. Research papers were narratively synthesised, thematically analysed, and critically appraised. RESULTS: Fourteen peer-reviewed research papers, and nineteen grey literature items were included in the review, with research papers found to be of reasonably high methodological quality. Five themes were identified, describing the experiences of employees with YOD: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement. CONCLUSION: Findings revealed evidence for an emerging understanding of the lived experience of developing YOD within the workplace; however, further research is needed regarding the capabilities and support needs for persons with YOD to influence workplace policies and practices.

Gender Identity Disclosure and Healthcare Services Uptake Among Chinese Transgender Individuals in China: Results from a Cross-Sectional Study.

Purpose: Culture and stigma-relevant issues discourage transgender individuals in China from gender identity disclosure, which may limit their access to comprehensive health care services. This study evaluates how gender identity disclosure to healthcare professionals would facilitate healthcare services in China. Methods: A cross-sectional study was conducted in nine cities across mainland China from December 2019 to June 2020 among transgender individuals. Participants completed questions covering socio-demographic information, Human Immuno-Deficiency Virus and Sexually Transmitted Infections (HIV/STI) testing habits, sexual risk behaviors, and access to medical and mental health services for the past 3 months. Results: A total of 277 eligible transgender individuals with a mean age of 29 ± 8 years old completed the survey. Overall, 56.0% (155/277) had disclosed their gender identity to health professionals. 83.9% had ever tested for HIV (with HIV prevalence of 12.9%), 54.2% had tested for STIs, 62.6% had used hormone therapy, and 12.3% had undergone gender-affirming surgery. Multivariable logistic regression showed that participants who had ever disclosed their gender identity to healthcare professionals were more likely to have tested for STIs (aOR = 1.94, 95%CI: 1.12-3.39) and HIV (aOR = 1.72, 95% CI 0.82-3.39), received hormone intervention therapy (aOR = 2.81, 95%CI: 1.56-5.05), and used pre-exposure prophylaxis (PrEP) (aOR= 3.51, 95%CI: 1.12-10.97) compared to non-disclosers. Conclusions: Our study demonstrated strong correlations between gender identity disclosure and healthcare services usage among Chinese transgender individuals. Facilitating the gender identity disclosure of transgender individuals to healthcare professionals with caution would be useful for improving their access to care.

Risk and Protective Factors in Dancers Exposed to Trauma.

PURPOSE: This study examined risk and protective factors in dancers with/without posttraumatic stress disorder (PTSD) and with/without trauma exposure. LITERATURE REVIEW: Exposure to traumatic events and developing PTSD can compromise daily functioning and performance ability. Despite exposure many dancers adapt, whereas others suffer psychopathology such as depression, anxiety, PTSD, and difficulties regulating emotions. METHODS: Two hundred ninety two pre-professional/professional dancers provided informed consent (IRB approved) and completed 8 self-report measures. A subsample (66%) exposed to a significant traumatic event was evaluated for PTSD. Multivariate analyses of covariance (MANCOVA) were conducted to compare dancers with/without PTSD and with/without trauma exposure. A logistic regression analysis determined predictors of PTSD. RESULTS: The MANCOVAs indicated that dancers exposed to trauma (66%) and who had PTSD (32%) had significantly more difficulty regulating emotions, engaged more emotion-oriented coping under stress, and had increased depression, trait anxiety, and cumulative trauma. In these group comparison analyses there were non-significant differences regarding flow experiences and task- and avoidance-oriented coping strategies. In the logistic regression analysis childhood physical and sexual abuse, childhood emotional neglect, mental illness within the family, and difficulty disclosing abuse experiences were predictors of PTSD. In the total sample 21% had PTSD. DISCUSSION AND CONCLUSIONS: This study identified types of abuse/trauma, emotion regulation/coping, and psychopathology associated with PTSD in dancers exposed to trauma (66%) and with PTSD (32%). In the total sample 21% had PTSD. Regardless of exposure to trauma or PTSD, the non-significant findings indicated similarities for dancers for global and autotelic flow experiences and task- and avoidance-oriented coping strategies. These positive factors may mitigate trauma-related symptoms. It is recommended that dancers, educators, and clinicians understand the effects of trauma exposure and promote the development of effective coping strategies, emotion regulation, and flow states which may diminish the negative effects of PTSD.

Validation of the Social Reactions-Online Questionnaire Among Adults Who Disclosed Online Victimization Via #MeToo.

The #MeToo movement of 2017 ushered in a wave of online disclosure of sexual victimization. The ways in which people respond to the disclosure of sexual victimization can play an important role in a survivor's recovery process. This study conducted an exploratory structural equation model (ESEM) of a questionnaire aimed at characterizing the ways in which others respond to the disclosure of sexual victimization in online spaces. Participants (N = 767) were recruited via social media to participate in a study of disclosure of unwanted sexual experiences, with 25.4% (n = 195) endorsing disclosing an unwanted sexual experience online using the hashtag #MeToo and were included in analyses. Participants completed the Online Social Reactions Questionnaire (OSRQ). The questionnaire included all 16 original items from the Short Version of the Social Reactions Questionnaire (SRQ). An additional 8 items specific to online disclosure, not covered by the SRQ were added at the end, bringing the proposed OSRQ to a total of 24 items. The updated measure included the 16 original items of the Short Version of the SRQ as well as 8 additional items, for a total of 24 items. ESEM confirmed the OSRQ as a 23-item measure with a four-factor structure: (a) Turning Against+, (b) Unsupportive Acknowledgment, (c) Positive Support+, and (d) Online Sharing; model fit: χ2(186) = 387.125, p < .001, CFI = 0.976, RMSEA = 0.074 (90% CI [0.064, 0.085]), SRMR = 0.034. The OSRQ revealed excellent Cronbach's alpha (α = .93) and McDonald's Omega (ω = .93). The OSRQ represents a new measure that can be used to characterize the way in which others respond to online disclosure of sexual victimization.

Strengthening open disclosure in maternity services in the English NHS: the DISCERN realist evaluation study.

Background: There is a policy drive in NHS maternity services to improve open disclosure with harmed families and limited information on how better practice can be achieved. Objectives: To identify critical factors for improving open disclosure from the perspectives of families, doctors, midwives and services and to produce actionable evidence for service improvement. Design: A three-phased, qualitative study using realist methodology. Phase 1: two literature reviews: scoping review of post-2013 NHS policy and realist synthesis of initial programme theories for improvement; an interview study with national stakeholders in NHS maternity safety and families. Phase 2: in-depth ethnographic case studies within three NHS maternity services in England. Phase 3: interpretive forums with study participants. A patient and public involvement strategy underpinned all study phases. Setting: National recruitment (study phases 1 and 3); three English maternity services (study phase 2). Participants: We completed n = 142 interviews, including 27 with families; 93 hours of ethnographic observations, including 52 service and family meetings over 9 months; and interpretive forums with approximately 69 people, including 11 families. Results: The policy review identified a shift from viewing injured families as passive recipients to active contributors of post-incident learning, but a lack of actionable guidance for improving family involvement. The realist synthesis found weak evidence of the effectiveness of open disclosure interventions in the international maternity literature, but some improvements with organisation-wide interventions. Recent evidence was predominantly from the United Kingdom. The research identified and explored five key mechanisms for open disclosure: meaningful acknowledgement of harm; involvement of those affected in reviews/investigations; support for families' own sense-making; psychological safely of skilled clinicians (doctors and midwives); and knowing that improvements to care have happened. The need for each family to make sense of the incident in their own terms is noted. The selective initiatives of some clinicians to be more open with some families is identified. The challenges of an adversarial medicolegal landscape and limited support for meeting incentivised targets is evidenced. Limitations: Research was conducted after the pandemic, with exceptional pressure on services. Case-study ethnography was of three higher performing services: generalisation from case-study findings is limited. No observations of Health Safety Investigation Branch investigations were possible without researcher access. Family recruitment did not reflect population diversity with limited representation of non-white families, families with disabilities and other socially marginalised groups and disadvantaged groups. Conclusions: We identify the need for service-wide systems to ensure that injured families are positioned at the centre of post-incident events, ensure appropriate training and post-incident care of clinicians, and foster ongoing engagement with families beyond the individual efforts made by some clinicians for some families. The need for legislative revisions to promote openness with families across NHS organisations, and wider changes in organisational family engagement practices, is indicated. Examination of how far the study's findings apply to different English maternity services, and a wider rethinking of how family diversity can be encouraged in maternity services research. Study registration: This study is registered as PROSPERO CRD42020164061. The study has been assessed following RAMESES realist guidelines. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research Programme (NIHR award ref: 17/99/85) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 22. See the NIHR Funding and Awards website for further award information.

This study describes the experiences of families and healthcare professionals involved in incidents in NHS maternity care. The incidents caused harm-like injury or death to the baby or woman. We wanted to know whether services involved families in investigations and reviews and how this was done, what worked well, what did not work well and why. To do this, we first looked at what had already been written about 'open disclosure' or OD. Open disclosure is when the NHS admits to families that the care they provided has directly caused harm. After open disclosure occurs, families should be involved in making sure that the NHS learns so it can deliver better care for families in the future. In our reading, we found that families want a meaningful apology, to be involved in reviews or investigations, to know what happened to their loved one, to be cared for by knowledgeable doctors and midwives who are supported in providing open disclosure and to know things have changed because of what happened. Recommendations for involving families in open disclosure have improved, but there is still work to be done to make sure families are involved. Next, we talked to over 100 healthcare professionals involved in government policy for open disclosure in maternity services and 27 families who experienced harm. We spent 9 months observing the work of clinicians at three maternity services to watch open disclosure. We shared early findings with families, doctors, midwives and managers, and included their views. We found that services need to provide dedicated time, education and emotional support for staff who provide open disclosure. Services need to ensure that families have ongoing support and better communication about incidents. Finally, families must be involved in the review process if they want to be with their experiences reflected in reports and kept informed of ongoing improvements.

Psychosocial implications of learning amyloid PET results in an observational cohort.

INTRODUCTION: Information on the psychosocial impact of Alzheimer's disease (AD) biomarker testing in adults at risk of AD is needed to inform best practices for communicating biomarker results. METHODS: Ninety-nine cognitively unimpaired older adults learned amyloid positron emission tomography (PET) results (mean age = 72.0 ± 4.8, 95% White, 28% elevated amyloid). Linear mixed-effects regression models were used to test the main effects and interaction of PET result × time on psychosocial outcomes up to 6 months after learning results. RESULTS: A significant interaction of PET result × time was observed for concern about AD (ß = 0.28, p = 0.02) and intrusive thoughts and avoidance (ß = -0.82, p < 0.001). A main effect of PET result was observed for AD test-related distress (ß = 12.09, p < 0.001). DISCUSSION: Cognitively unimpaired adults learning elevated-amyloid PET results reported mildly intrusive thoughts/avoidance initially following disclosure, but these symptoms decreased over time. Concern about AD dementia and AD biomarker test-related distress remained higher in elevated-amyloid compared to non-elevated-amyloid participants. HIGHLIGHTS: Longitudinal assessment of psychosocial reactions after amyloid PET disclosure was conducted. Transient highly intrusive thoughts or avoidance after learning elevated amyloid results. Persistent test result-related distress after receiving elevated-amyloid results. There is increased concern about AD dementia after receiving elevated-amyloid results. Happiness and relief are experienced after receiving non-elevated-amyloid results.

"Nothing Was Done": Experiences of continued sexual abuse after disclosing to a mandated reporter among youth in the United States.

BACKGROUND: Disclosing ongoing child sexual abuse (CSA) to a mandated reporter should facilitate youth safety. Unfortunately, youth may continue to experience abuse after disclosure, although little research has examined this phenomenon. OBJECTIVE: We aimed to understand when and why the child protection process fails after youth disclose to a mandated reporter. PARTICIPANTS AND SETTING: Hotline support specialists completed an online survey about 124 anonymous hotline chats with youth whose abuse continued after a prior disclosure to a mandated reporter. METHODS: We thematically analyzed support specialists' open-ended descriptions of information disclosed by the victim in their chat. RESULTS: In most cases (71 %), the abuse was seemingly not reported or not investigated. Mandated reporters' belief of the victim and minimization of abuse affected reporting decisions. Some mandated reporters tried to address the abuse directly with the perpetrators, endangering victims. Rarely, mandated reporters did not report to respect the victim's wishes. In 24 % of cases, the victim described an investigation that did not result in protection. Victims indicated that investigators "sided to the perpetrator" or said there was not enough evidence. Some victims recanted, often in fear. In 6 % of cases, formal actions were taken but did not provide long-term protection. Victims described temporary cessation of abuse that resumed because their guardian(s) allowed the perpetrator to access them. CONCLUSIONS: Disclosing to a mandated reporter can engender traumatic experiences without resulting in long-term safety. Professionals need additional training to increase their knowledge of CSA and respond in ways that prioritize physical and emotional safety.

Patient and provider attitudes regarding sudden unexpected death in epilepsy disclosure at a low-resource, minority community health center.

BACKGROUND: Sudden Unexpected Death in Epilepsy (SUDEP) is a complication of epilepsy responsible for approximately 1 death per 1000 patients. The literature has demonstrated minimal SUDEP disclosure between providers and patients, although patients have consistently reported desire to know about their risk. However, the majority of these studies has been conducted in Caucasian populations which did not seek to include lower socio-economic class individuals. Thus, the purpose of this study is to determine patient and provider attitudes regarding SUDEP disclosure at a community health center serving minority, predominantly Hispanic, patients. METHODS: This cross-sectional study utilized surveys distributed to patients with epilepsy (n = 20), patients with diabetes (n = 20), those with no chronic disease (n = 20) and providers (n = 13). Online surveys were distributed to 13 providers whereas phone surveys were conducted for patients with epilepsy. In-person surveys were distributed to patients with diabetes and no chronic disease to serve as comparison groups. Surveys were available in both Spanish and English. Patient surveys consisted of demographic information and questions evaluating their current knowledge and preferences regarding disclosure of a potentially fatal disorder. RESULTS: Twenty patients with epilepsy, 20 patients with diabetes, 20 patients without chronic diseases, and 9 providers responded to the online or in-person surveys. Of the patients with epilepsy, 90 % (n = 18/20) were Hispanic which was not significantly different from the comparison groups. 45 % (n = 9/20) believed they had a higher rate of death due to epilepsy with only 3 patients having heard of SUDEP prior to the survey, and only 1 learning this from a physician. All patients wanted to know everything there was to know regarding their condition, including a higher risk of unexpected death. Most patients (85%, n = 17/20) believe everyone with epilepsy should be informed of SUDEP and this information should come from their provider (90 %, n = 18/20). Results were similar for both comparison groups, except patients with diabetes unanimously desired to know about a theoretical risk of death at the time of diagnosis. Of the providers, 66.7% (n = 6/9) never discuss SUDEP, with the remaining 33.3% (n = 3/9) discussing SUDEP rarely. The primary reason for not discussing SUDEP was not knowing enough about it (66.7%, n = 5/9). CONCLUSION: Almost all patients with epilepsy had no knowledge of SUDEP, yet desired to know this information within the first two visits. Providers in the primary care setting rarely discuss SUDEP, most often due to lack of knowledge. These results are very similar to those found in mainly white, higher socioeconomic populations and indicate that race should not be a barrier to SUDEP disclosure.

The Job Demands and Accommodation Planning Tool (JDAPT): A Nine-Month Evaluation of Use, Changes in Self-efficacy, Presenteeism, and Absenteeism in Workers with Chronic and Episodic Disabilities.

PURPOSE: Enhancing workplace communication and support processes to enable individuals living with disabilities to sustain employment and return to work is a priority for workers, employers, and community stakeholders. The objective of this study was to evaluate a new resource that addresses support challenges, the Job Demands and Accommodation Planning Tool (JDAPT), and assess its use, relevance, and outcomes over a nine-month follow-up period. METHODS: Workers with physical and mental health/cognitive conditions causing limitations at work were recruited using purposive sampling. Online surveys were administered at baseline (prior to using the JDAPT), and at three and nine months post-baseline. Information was collected on demographics (e.g., age, gender) and work characteristics (e.g., job sector, organization size). Outcomes included assessing JDAPT use and relevance, and changes in self-efficacy, work productivity difficulties, employment concerns, difficulties with job demands, and absenteeism. RESULTS: Baseline participants were 269 workers (66% women; mean age 41 years) of whom 188 (69.9%) completed all three waves of data collection. Many workers reported using JDAPT strategies at and outside of work, and held positive perceptions of the tool's usability, relevance, and helpfulness. There were significant improvements (Time 1-2; Time 1-3) in self-efficacy, perceived work productivity, and absenteeism with moderate to large effect sizes in self-efficacy and productivity (0.46 to 0.78). Findings were consistent across gender, age, health condition, and work context variables. CONCLUSIONS: The JDAPT can enhance support provision and provide greater transparency and consistency to workplace disability practices, which is critical to creating more inclusive and accessible employment opportunities.