Mães no período de situação pandémica por COVID-19: Das vivências às narrativas / Mothers during the COVID-19 pandemic: From experiences to narratives / Madres durante la pandemia de COVID-19: De las experiencias a los relatos

Resumo Enquadramento: A pandemia por COVID-19 trouxe inúmeros desafios às mães de crianças e jovens até aos 18 anos de idade, pela gestão de responsabilidades a que o seu papel social se encontra inerente. Objetivo: Compreender quais são os significados e os contextos das vivências de mães portuguesas de crianças e jovens adolescentes até aos 18 anos de idade, no período de situação pandémica por COVID-19; Metodologia: Estudo qualitativo, descritivo e retrospetivo recorrendo à análise de conteúdo de Bardin. Participaram no estudo 16 mulheres, mães de crianças e jovens adolescentes até aos 18 anos de idade. Resultados: Emergiram um total de nove categorias, sendo elas - Sentimentos; Perceção de saúde; Alterações no estado de saúde; experiências marcantes; Significado das experiências; Dificuldades sentidas durante o período de situação pandémica; dificuldades sentidas na educação; dificuldades sentidas enquanto mãe e mulher e impactos na educação dos filhos. Conclusão: A maioria das mães entrevistadas considerou o período pandémico por COVID-19 como uma fase impactante nas suas vidas, originando ambivalência de sentimentos e contextos vivenciais distintos.

Abstract Background: The COVID-19 pandemic has posed many challenges for mothers of children and adolescents up to 18 years of age in managing the responsibilities associated with their social roles. Objective: To understand the meanings and contexts of the experiences of Portuguese mothers of children and adolescents up to 18 years of age during the COVID-19 pandemic. Methodology: Qualitative, descriptive, and retrospective study using Bardin's content analysis. The sample consisted of 16 mothers of children and adolescents up to 18 years of age. Results: Nine categories emerged - Feelings; Perception of health; Changes in health status; Significant experiences; Meaning of experiences; Difficulties felt during the pandemic; Difficulties felt in education; Difficulties felt as a mother and wife; and Impact on children's education. Conclusion: Most of the interviewed mothers considered the COVID-19 pandemic a significant period in their lives, giving rise to ambivalent feelings and distinct life contexts.

Resumen Marco contextual: La pandemia de SARS- CoV-2 ha planteado numerosos retos a las madres de niños y jóvenes de hasta 18 años, debido a la gestión de las responsabilidades inherentes a su papel social. Objetivo: Comprender los significados y contextos de las experiencias de las madres portuguesas de niños y jóvenes adolescentes de hasta 18 años, durante la situación de pandemia de COVID-19. Metodología: Estudio cualitativo, descriptivo y retrospectivo mediante el análisis de contenido de Bardin. Participaron en el estudio 16 mujeres, madres de niños y jóvenes adolescentes de hasta 18 años. Resultados: Surgieron un total de nueve categorías - Sentimientos; Percepción de la salud; Cambios en el estado de salud; Experiencias notables; Significado de las experiencias; Dificultades sentidas durante la situación de pandemia; Dificultades sentidas en la educación; Dificultades sentidas como madre y esposa, e Impactos en la educación de los hijos. Conclusión: La mayoría de las madres entrevistadas consideraron que el periodo de la pandemia de COVID-19 fue una fase impactante en sus vidas, lo que dio lugar a una ambivalencia de sentimientos y diferentes contextos experienciales.

"It saved me": A thematic analysis of experiences of psychological therapy following critical illness and intensive care.

Background: ICU-survivors are likely to struggle with psychological wellbeing. Providing post-ICU therapeutic interventions is a relatively novel field and little is known about patients' experiences. Methods: Thematic analysis was used to analyze semi-structured interviews with 20 ICU-survivors who had accessed psychological therapy following discharge from an ICU in the Southwest of Britain. Descriptive statistics were used to summarize data to provide service related contextual information. Results: Five themes emerged from the data: the impact of critical illness, value of therapy, accessing therapy, process of therapy and role of psychologist. Psychological therapy is viewed as an important part of recovery. Critical illness is a complex experience. Therapy supported sense-making, acceptance and moving forwards. Although therapy could be initially difficult, there were lasting positive effects. There were different challenges to and facilitators of accessing therapy and offering ongoing support provided reassurance. A safe therapeutic relationship and an ICU-specific service was important. Conclusion: Psychological therapy, alongside other rehabilitation interventions, can facilitate recovery. Considerations for local and wider service development are discussed.

Defining fatigue from the experiences of patients living with chronic fatigue.

Introduction: Fatigue is a multidimensional, highly individualized symptom experience perceived by people, regardless of health status. It is the most common complaint among those seeking primary care, yet, despite being a frequently reported symptom, it remains poorly understood. Methods: This is an exploratory study utilizing a qualitative descriptive approach that aims to explore the description of fatigue from the personal experiences of 16 participants living with chronic fatigue. Themes were generated from transcripts of in-depth interviews that focused on a central question: "how would you describe your fatigue from your own experience?" Results: Analysis of the participants' interview transcripts revealed three themes. The first theme focused on fatigue as a unique personal experience, which included experiential descriptions or measures of fatigue that the participants used to describe their symptoms. The second theme focused on fatigue as an experience beyond self, which highlighted the consequences of fatigue on interpersonal interactions and the performance of social roles, as well as the potential of utilizing social support to cope with the limitations caused by this condition. The last theme was on living with fatigue, which focused on ways participants attempted to discern their condition and manage the consequences of fatigue. Discussion: Experiences of chronic fatigue have patterns and personal meanings that vary between individuals. Caring for persons experiencing chronic fatigue requires acknowledgment of unique personal experiences and coping strategies. Due to the nature of the method, the results of this study are not generalizable and only reflect the experiences of the participants.

The Impact of Yoga on Athletes' Mental Well-Being: An Experimental Study.

Background Athletes have a variety of obstacles that might shrink their chances of getting adequate rest, including competing and training times, travel, stress, academic responsibilities, and overtraining. Furthermore, athletes have been reported to have poor self-reports of their sleep length and quality. The study aims to assess the impact of yoga practice on sleep quality, stress, anxiety, psychological rigidity, and experience avoidance. Methods A pre- and post-test randomized design was applied for the research. Forty-four recreational athletes (age 18-45 years) were selected per the inclusion criteria from the athletes studying at Banaras Hindu University. Exclusion criteria are a likely severe psychiatric disorder, chronic illness, substance abuse, disability, endocrine or metabolic disorders, and history of using psychotropic drugs and smoking. The Yogic intervention contains the Pranayama and meditation, which was practiced for six weeks in the intervention group. Outcome variables were stress, sleep, anxiety, mindfulness, psychological rigidity, and experience avoidance. The Perceived Stress Scale (PSS), Pittsburgh Sleep Quality Index (PSQI), Sport Competition Anxiety Test, Mindful Attention Awareness Scale (MAAS), and Acceptance and Action Questionnaire-II (AAQ-II) were applied to measure the outcomes. Results The majority of the participants (30 (68%)) were male, and 44 (100%) had more than two years of sports experience. Of the participants, 18 (40.90%) had a habit of 3-5 hours of internet surfing. We noticed that there was a significant mean difference from pre- to post-intervention in terms of stress, sleep, anxiety, mindfulness, psychological rigidity, and experience avoidance (p < 0.0001). Conclusion The results concluded positive effects of yoga on athletes' stress, sleep, anxiety, mindfulness, psychological rigidity, and experience avoidance in athletes. Stress alleviation and reduced anxiety are the strongest predictors of improving psychological flexibility skills in athletes' daily lives. Improving mindfulness and supporting good sleep patterns could be good indicators of improving psychological rigidity and experience avoidance.

Hospital competition when patients learn through experience.

We study competing hospitals' incentives for quality provision in a dynamic setting where healthcare is an experience good. In our model, the utility a patient derives from choosing a particular provider depends on a subjective component specific to the match between the patient and the provider, which can only be learned through experience. We find that the experience-good nature of healthcare can either reinforce or dampen the demand responsiveness to quality and the hospitals' incentives for quality provision, depending on two key factors: the shape of the distribution of match-specific utilities and the cost relationship between quality provision and treatment volume. We establish conditions under which ignoring the experience dimension of healthcare leads to inaccurate assessments of the competitiveness of hospital markets.

Evaluating cancer patient-reported experience measures against health literacy best practices.

PURPOSE: Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care. METHODS: To assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement, and expert consultation were collected. Finally, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care. RESULTS: Thirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles. CONCLUSION: Cancer PREMs included in this study did not meet evidence-informed thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured and that PREMs are designed to meet the needs of all patients.

Community Outreach, Engagement, and Mentoring Program for Underrepresented Scholars in Cancer Health Disparities.

Racial/ethnic minorities and women are affected by cancer and cancer risk factors at higher rates; however, they are largely underrepresented in scientific professions focused on health disparities. One way to reduce disparities is to increase diversity within the workforce by planning training activities for minority scholars and paying close attention to community outreach. This paper describes the outcomes of a robust community outreach plan engaging communities in education, research, and clinical trials to increase the number of underrepresented student scholars in cancer disparities research through research training, mentorship, and service-learning activities provided within local organizations. The program provided two cohorts of scholars from underrepresented communities with opportunities to attend seminars, present their research to community representatives, and connect with the local community. Cohort 1 consisting of ten scholars participated in a 2-year program that started in the summer of 2018. Cohort 2, consisting of seven scholars, participated in a 1-year program starting in June 2020. Overall, scholars provided positive feedback on all service-learning program activities and the effectiveness of the program in shaping career interests. New procedures developed in response to the COVID-19 pandemic continued the effective management of all components of the program and helped increase engagement with the community outreach staff. The outreach program evaluated here can prepare diverse scholars to enter the workforce with interdisciplinary training for mitigating cancer disparities and serve as a model for planning and implementing similar programs at other institutions.

Feasibility and Acceptability Study of a Culturally Adapted Web-Based Intervention to Reduce Suicidal Ideation for Syrian Asylum Seekers and Refugees in the United Kingdom: Protocol for a Mixed Methods Study.

BACKGROUND: The war in Syria has displaced over 6.8 million people, more than any other conflict since the Second World War. As a result, Syrian asylum seekers and refugees have experienced several life-changing events, resulting in high rates of anxiety, depression, posttraumatic stress disorder, and suicidal ideation (SI). To address the treatment gap and reduce the burden of help-seeking, a web-based intervention to reduce SI developed for general populations was culturally adapted for and with Syrian asylum seekers and refugees in the United Kingdom. The study revealed the importance of understanding their lived experience with migration and the acculturative process in providing treatment for SI. This study will now assess the feasibility and acceptability of the culturally adapted intervention for this population. OBJECTIVE: The first phase of the study will include recruiting participants and delivering the web-based intervention (1) to assess the feasibility of meeting recruitment goals and recruitment rates and (2) to assess the feasibility of outcome measures. The second phase of the study will include one-to-one semistructured interviews (1) to assess the suitability of the culturally adapted intervention in terms of recruitment and adherence rates and barriers and facilitators to engagement and (2) to assess the acceptability of the intervention in terms of its cultural relevance and appropriateness. METHODS: This is a protocol for a single-group, noncontrolled, mixed methods feasibility and acceptability study of a culturally adapted web-based intervention to reduce SI for Syrian asylum seekers and refugees in the United Kingdom. The study will assess the feasibility of recruitment goals, recruitment rates, adherence rates, and outcome measures using individual participant tracking forms, which will be analyzed quantitatively. The suitability and acceptability of the intervention will be assessed using one-to-one semistructured interviews with 12 participants who completed the intervention, which will be analyzed qualitatively. RESULTS: Recruitment began in February 2024 and will run until 30 participants are recruited to the study or until the end of July 2024. Thus far, 19 participants have provided informed consent, 16 were eligible and enrolled, and 12 have completed a postintervention interview. No data have been analyzed. The study, including the write-up period, is expected to end in December 2024. CONCLUSIONS: Despite experiencing several stressors related to forced displacement and high rates of mental health issues, access to treatment is still limited for Syrian asylum seekers and refugees in the United Kingdom. To address the treatment gap and reduce the burden of help-seeking, a web-based intervention to reduce SI was culturally adapted in collaboration with Syrian asylum seekers and refugees in the United Kingdom. This study will now assess the feasibility and acceptability of the intervention and culturally appropriate recruitment strategies. TRIAL REGISTRATION: ISRCTN ISRCTN11417025; https://www.isrctn.com/ISRCTN11417025. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/56957.

Real-world demographic and clinical profiles of patients with treatment-resistant depression initiated on esketamine nasal spray.

OBJECTIVE: ESKALE is a French, multicentre, observational study of adults with treatment-resistant depression (TRD) treated with esketamine. This interim analysis describes baseline demographic and clinical characteristic evolution in patients included and treated from early access program to post-marketing launch. METHODS: Data were collected from medical records and included patient characteristics, disease history at esketamine initiation, use of neurostimulation, the patient's care pathway, and the number of antidepressant treatment lines prescribed prior to esketamine initiation. Descriptive statistics were used for each cohort: the early access program 'Temporary Authorisation for Use' (ATU), post-ATU, and post-launch cohorts. RESULTS: The overall ESKALE cohort (N = 160 included; n = 157 treated with esketamine; average age 49.0 years; 66.2% female) demonstrated moderate-to-severe depression according to clinical assessment and a mean Montgomery-Åsberg Depression Rating Scale score of 32.6 (8.0); however, severity, subtype, and comorbidities were heterogeneous across the cohorts. Earlier use of esketamine and prior to alternative treatments occurred during the later cohorts. CONCLUSION: These findings demonstrated a high burden of TRD in these patients and that esketamine is used in TRD treatment regardless of their disease severity, subtype, or existing comorbidities. These results also suggest that esketamine is potentially a clinically useful alternative treatment, particularly with healthcare professionals gaining greater familiarity with and easier access to esketamine.

ESKALE is a long-term, French, multicentre, observational study based on secondary data in adult patients with treatment-resistant depression (TRD) who initiated esketamine treatment in one of three mutually exclusive cohorts: the Temporary Authorisation for Use (ATU), post-ATU, and post-launch cohorts.ESKALE is one of the largest European real-world studies investigating the profiles of more than 150 patients and their treatment with esketamine before and after marketing authorisation.A majority of patients had moderate to severe TRD, with multiple treatment failures with medications and/or neurostimulation prior to esketamine initiation.Esketamine nasal spray administration was undertaken more frequently in an outpatient setting, with the post-administration period monitoring being undertaken mostly by nurses.Esketamine was used in patients with TRD in real-world conditions regardless of their disease severity and subtype or existing comorbidities.These results highlight both the need for an effective treatment for TRD and the adoption of esketamine by multidisciplinary teams that are involved in esketamine prescription and administration.

Exploring the Pathways to Diagnosis for Men With Borderline Personality Disorder: A Qualitative Study.

Borderline personality disorder (BPD) is often perceived as being more common in females, since women are more likely to seek help and be diagnosed. However, epidemiological studies have reported no sex differences in community prevalence. The purpose of this study was to learn from the narrative journeys of men who have received a diagnosis of BPD. Eight men participated, mean age 45.9 years (range 27-73 years). Recruitment was through clinician referrals at the study site and via social media and website advertising. Participants consented to a 60-90-min semi-structured interview via an audio-visual digital platform. Audio recordings were transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Three themes were identified: (i) The Emergence of Symptoms, (ii) Reaching Crisis Point and (iii) Receiving a Diagnosis. Participants reported many adverse experiences during childhood and adolescence. Early symptoms were often exacerbated by emotionally invalidating caregiving. Participants reported seeking mental health support only after reaching a crisis point, which often arose following an employment-related stressor. Participants typically initiated help-seeking by consulting a General Practitioner. Long delays were reported from initial help-seeking to being diagnosed with BPD; all expressed relief upon diagnosis. The findings highlight the deleterious consequences of emotional invalidation in participants' mental health and their capacity to access timely support. General Practitioners play a critical role in identifying probable symptoms of BPD in men and are the gateway to referral to psychiatrists and psychologists. It is vital that education is provided to assist their important work.

Experienced financial toxicity among long-term cancer survivors: results from a national cross-sectional survey.

PURPOSE: Financial toxicity, the subjective distress caused by objective financial burden, significantly impacts cancer survivors. Yet, enduring effects on survivors remain unclear. Therefore, we investigated the experienced objective financial burden and subjective financial distress in long-term cancer survivors. METHODS: A cross-sectional nationwide online survey of adult cancer survivors ≥ 5y after diagnosis were analyzed. Objective financial burden was measured via extra expenses and income loss, while subjective financial distress covered psychological well-being, coping and support-seeking behavior, and financial concerns. Groups were compared (i.e., having cancer vs. former patients) by t-tests and chi-squared tests. Financial toxicity was visualized with Sankey plots and sunburst diagrams. RESULTS: 4,675 respondents completed the survey, of whom 2,391 (51%) were ≥ 5y after their cancer diagnosis. Among them, 75% experienced income loss and/or extra expenses after diagnosis. One-third of the previously employed respondents relied on work disability benefits. Further, 'being unable to make ends meet' increased from 2% before diagnosis to 13% ≥ 5y after diagnosis (p < .001). Additionally, 58% reported negative psychological impacts of financial toxicity, and 47% worried about their financial future. CONCLUSIONS: Cancer survivors often face income loss and additional expenses, leading to ongoing financial difficulties that affect their psychological well-being. Despite this significant impact, there is a lack of guidance and support to help them manage these financial challenges. These findings highlight the need for healthcare professionals to recognize and address the financial challenges. IMPLICATIONS FOR CANCER SURVIVORS: This study underscores the widespread financial challenges cancer survivors encounter, emphasizing the need for ongoing financial support and comprehensive assessments of their physical and psychological well-being.

Physiotherapy experiences of injured immigrant workers in Quebec: an intersectional perspective.

PURPOSE: Immigrant workers are more likely to suffer work-related injuries compared to native-born Canadians. Their physical rehabilitation usually involves physiotherapy. This study sought to better understand the experiences of injured immigrant workers receiving compensation and physiotherapy treatments. MATERIALS AND METHODS: We conducted a qualitative study using an interpretive descriptive methodology. Semi-structured interviews were completed with 10 compensated immigrant workers about the physiotherapy services they received. Transcripts were analyzed thematically and with an intersectional lens. RESULTS: Two major themes were identified: 1) complex pathways to physiotherapy, and 2) key pillars of physiotherapy experiences. The first theme demonstrates that a lack of familiarity with the health and compensation systems, delayed access to physiotherapy, and cumulative burdens complicate the care of immigrant workers. The second theme shows that moral/emotional support, pain relief, and the recognition of sociocultural beliefs and fears are key aspects to improving the experiences of care for these workers. CONCLUSIONS: This study offers new insights into physiotherapy in the context of a work injury, which may help physiotherapists adapt care to the complex needs of immigrant workers. The intersectional lens used in the analysis offers interesting ways of accounting for the multiple social identities of these workers.

Injured immigrant workers are at a heightened risk of experiencing impacts on both their physical and mental well-being.Rehabilitation professionals should be supported with resources and training to facilitate timely access to care for immigrant workers, including education on the health and compensation systems.Healthcare institutions should ensure that rehabilitation professionals have the tools and support to develop culturally sensitive approaches that address systemic and sociocultural barriers faced by immigrant workers.

Associations Between Telemedicine Use Barriers, Organizational Factors, and Physician Perceptions of Care Quality.

Introduction: Evaluating physician perceptions of telemedicine use and its impact on care quality among physician providers is critical to sustaining telemedicine programs, given the uncertainty of reimbursement policy, preferences, inadequate training, and technical difficulties. Physicians reported technical barriers to effectively practicing integrated medicine using telemedicine as patient volumes increased during the pandemic. The objective of this work was to examine whether perceived practice barriers and facilitators were associated with physician respondents' perceptions of telemedicine care quality compared with in-person care. Methods: This cross-sectional study analyzed the 2021 National Electronic Health Record Survey. The sample comprised 1,857 nonfederally employed physicians (weighted n = 403,013) delivering integrated patient care. Of those physicians, 1,630 (weighted n = 346,646) reported providing care through telemedicine. We reported frequencies and percentages of reported practice characteristics. Generalized ordinal logistic regressions examined relationships between practice factors and care quality for telemedicine care. Results: Most of the sample (n = 1,630) were male (66.1%), >50 years of age (66.1%), and worked in a single location (73.5%). A total of 70% of respondents reported that patients had difficulty using telemedicine platforms, and 64% reported limitations in patients' access to technology. Most respondents indicated having provided quality care to some extent (45%) and to a great extent (26%) during telemedicine visits compared to in-person visits. Associations between barriers, facilitators, and care quality perceptions were positive, underscoring resiliency in telemedicine programs among practices. Conclusion: Care modalities and the organizational, environmental, and personal facilitators drive quality perceptions among physicians. Perceived fit and usability determine perceptions of care quality for providers integrating telemedicine into their practice.

Spatial-social familiarity complements the spatial-social interface: evidence from Yellowstone bison.

Social animals make behavioural decisions based on local habitat and conspecifics, as well as memorized past experience (i.e. 'familiarity') with habitat and conspecifics. Here, we develop a conceptual and empirical understanding of how spatial and social familiarity fit within the spatial-social interface-a novel framework integrating the spatial and social components of animal behaviour. We conducted a multi-scale analysis of the movements of GPS-collared plains bison (Bison bison, n = 66) residing in and around Yellowstone National Park, USA. We found that both spatial and social familiarity mediate how individuals respond to their spatial and social environments. For instance, individuals with high spatial familiarity rely on their own knowledge as opposed to their conspecifics, and individuals with high social familiarity rely more strongly on the movement of conspecifics to guide their own movement. We also found that fine-scale spatial and social phenotypes often scale up to broad-scale phenotypes. For instance, bison that select more strongly to align with their nearest neighbour have larger home ranges. By integrating spatial and social familiarity into the spatial-social interface, we demonstrate the utility of the interface for testing hypotheses, while also highlighting the pervasive importance of cognitive mechanisms in animal behaviour. This article is part of the theme issue 'The spatial-social interface: a theoretical and empirical integration'.

Sexual Alcohol Expectancies, Alcohol Intoxication, and Sexual Behavior in MSM: An Experience Sampling Study.

Despite advances in prevention and treatment, the transmission of human immunodeficiency virus remains a significant problem in the United States, especially among men who have sex with men (MSM). Alcohol use can promote risky sexual decisions, and alcohol expectancies may influence the role of alcohol in decision making. The present secondary analysis tests the moderating role of sexual alcohol expectancies (SAEs) in the relation between daily alcohol intoxication and sexual behavior in a sample of 248 moderate- to heavy-drinking MSM. SAEs were assessed with the Sexual Alcohol Expectancies Questionnaire at baseline, followed by two 23-day bursts of ecological momentary assessment including self-initiated morning assessments of sexual behavior and the prior night's perceived intoxication, as well as nine daily random alcohol assessments. Multilevel modeling showed that SAEs moderated a curvilinear association between intoxication and anal intercourse with a condom such that the relation between daily intoxication and anal intercourse with a condom is a more pronounced inverted u-shape among individuals with strong SAEs, and this moderation effect was not seen for condomless anal intercourse (CAI). While SAEs do appear to influence the association between intoxication and sexual behavior in MSM, they do not appear to moderate the association between alcohol intoxication and CAI.

Charting Diagnostic Safety: Exploring Patient-Provider Discordance in Medical Record Documentation.

BACKGROUND: The 21st Century Cures Act enables patients to access their medical records, thus providing a unique opportunity to engage patients in their diagnostic journey. OBJECTIVE: To explore the concordance between patients' self-reported diagnostic concerns and clinician-interpreted information in their electronic health records. DESIGN: We conducted a mixed-methods analysis of a cohort of 467 patients who completed a structured data collection instrument (the Safer Dx Patient) to identify diagnostic concerns while reviewing their clinician's notes. We conducted a qualitative content analysis of open-ended responses on both the tools and the case summaries. Two clinical chart reviewers, blinded to patient-reported diagnostic concerns, independently conducted chart reviews using a different structured instrument (the Revised Safer Dx Instrument) to identify diagnostic concerns and generate case summaries. The primary outcome variable was chart review-identified diagnostic concerns. Multivariate logistic regression tested whether the primary outcome was concordant with patient-reported diagnostic concerns. SETTING: Geisinger, a large integrated healthcare organization in rural and semi-urban Pennsylvania. PARTICIPANTS: Cohort of adult patients actively using patient portals and identified as "at-risk" for diagnostic concerns using an electronic trigger algorithm based on unexpected visit patterns in a primary care setting. RESULTS: In 467 cohort patients, chart review identified 31 (6.4%) diagnostic concerns, of which only 11 (21.5%) overlapped with 51 patient-reported diagnostic concerns. Content analysis revealed several areas of discordant understanding of the diagnostic process between clinicians and patients. Multivariate logistic regression analysis showed that clinician-identified diagnostic concerns were associated with patients who self-reported "I feel I was incorrectly diagnosed during my visit" (odds ratio 1.65, 95% CI 1.17-2.3, p < 0.05). CONCLUSION: Patients and clinicians appear to have certain differences in their mental models of what is considered a diagnostic concern. Efforts to integrate patient perspectives and experiences with the diagnostic process can lead to better measurement of diagnostic safety.

Dogs with prior experience of a task still overimitate their caregiver.

Domestic dogs have been shown to copy their caregiver's actions, including ones which are causally-irrelevant to a physical goal-a behaviour called "overimitation". In a new overimitation task with a non-food reward, this study investigated "causal misunderstanding"-falsely assuming causally-irrelevant actions to have functional relevancy-as an explanation for dog overimitation (N = 81). By providing dogs with prior experience of the task to learn about the consequences of its irrelevant box-stepping and relevant bucket-opening action to obtain a toy-ball, we tested whether and when dogs would copy their caregiver's irrelevant-action demonstrations. Dogs with and without prior experience were compared to a third (control) group of dogs, who had neither prior experience nor caregiver demonstrations of the task. Results revealed that the timing of overimitation, rather than its frequency, was closely related to dogs' prior experience: dogs with prior experience attended to their reward first, then interacted with the irrelevant box later ("post-goal overimitation"), while dogs without prior experience first interacted with the irrelevant box ("pre-goal overimitation"). Our results suggest that, when action consequences are understood, dogs are overimitating for a secondary social goal that is clearly distinct from the task goal of obtaining a physical reward.

Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis - the SAPIENCE study protocol.

BACKGROUND: N-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined. METHODS: SAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another. DISCUSSION: SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.

Navigating the ethical complexities of severe and enduring (longstanding) eating disorders: tools for critically reflective practice and collaborative decision-making.

Decisions about the treatment of eating disorders do not occur in a socio-political vacuum. They are shaped by power relations that produce categories of risk and determine who is worthy of care. This impacts who gets access to care and recognition of rights in mental health services. Globally, there are calls for more human rights-based approaches in mental health services to reduce coercion, improve collaborative decision making and enhance community care. Treating individuals with longstanding, Severe and Enduring Eating Disorders (SEED) or Severe and Enduring Anorexia Nervosa (SE-AN) can be particularly problematic when it involves highly controversial issues such as treatment withdrawal and end-of-life decisions and, where legally permissible, medically assisted dying. In this article, we argue that the socio-political context in which clinical decision making occurs must be accounted for in these ethical considerations. This encompasses considerations of how power and resources are distributed, who controls these decisions, who benefits and who is harmed by these decisions, who is excluded from services, and who is marginalised in decision making processes. The article also presents tools for critically reflective practice and collaborative decision-making that can support clinicians in considering power factors in their practice and assisting individuals with longstanding eating disorders, SEED and SE-AN to attain their rights in mental health services.

Help-Seeking Needs Related to Suicide Prevention for Individuals in Contact With Mental Health Services: A Rapid Scoping Review.

INTRODUCTION: Prior mental healthcare utilisation presents an important window of opportunity for providing suicide prevention interventions. To date, no reviews have consolidated the help-seeking needs of individuals in contact with mental health services. This warrants further attention given this group may have different needs for interventions compared with the general population who have not sought help previously. AIM: The purpose of this rapid scoping review was to summarise the available literature on help-seeking needs related to suicide prevention among individuals in contact with mental health services from healthcare settings. METHOD: Cochrane rapid review and Joanna Briggs Institute scoping review methodologies were adapted, and databases, including MEDLINE, Scopus, CINAHL, PsycInfo and EMBASE, were searched. RESULTS: A total of 42 primary studies were included in analysis. Reported barriers and facilitators to help-seeking behaviours identified within studies were mapped onto the socio-ecological model. Barriers and facilitators identified included knowledge and attitudes towards healthcare utilisation, family and peer support, interactions with healthcare professionals, provision of holistic care, and the creation of a supportive atmosphere and safe space to promote open discussions of suicide-related concerns. DISCUSSION: The findings of this review offer valuable insights into areas for improvement in addressing help-seeking needs for individuals who are in contact with health services related to suicide prevention. IMPLICATION FOR RESEARCH: The findings serve as a foundation for shaping mental health initiatives informing approaches and care delivery tailored towards individuals who are in contact with health services. The reported barriers and facilitators offer insights to inform the development of mental health support tools to enhance care and considerations for evaluations.