Failure to Rescue (FTR) refers to patient death following a complication despite opportunities for timely recognition and intervention. Residents are particularly vulnerable during FTR events because they provide frontline care while training within hierarchical systems. Although FTR is widely used as a quality indicator, its impact on residents remains underexplored. This study examined residents' emotional responses, coping strategies, and the influence of supervisory behavior and institutional culture on recovery and learning. We conducted a qualitative interview study following constructivist grounded theory (CGT). Semi-structured interviews were performed with residents from multiple Swiss hospitals between October 2022 and May 2023. Interviews explored emotional experiences related to FTR events, coping mechanisms, supervisory interactions, and perceptions of institutional culture. Data was analyzed iteratively using constant comparison, memo writing, and reflexive team discussions. Fifteen residents (4 males, 11 females), primarily from surgery and internal medicine, participated. Mean age was 30.6 years, with an average of 2.6 years of residency experience. Four interrelated themes emerged: (1) temporal layering of emotional responses, from shock to insecurity and rumination; (2) problem- and emotion-focused coping strategies, including vigilance, peer support, and counseling; (3) supervisory responses, where guidance, debrief, or silence shaped emotional outcomes; and (4) institutional error culture, which influenced expectations around coping and responsibility. Participants described self-doubt, avoidance, and hypervigilance that evolved into either constructive learning or prolonged distress depending on team and organizational support. FTR events can leave emotional and professional effects on residents. Supportive leadership, structured debriefings, and accessible psychological support facilitated recovery and learning, whereas silence and blame intensified distress and avoidance. These findings informed a model of contextually mediated recovery in which supervisors serve as key interpreters of failure, while institutional culture facilitates or constrains this role. Coping with FTR is a collective responsibility embedded within team and institutional culture.
Involving people with lived experience in research (patient and public involvement or co-production) is one principle of open research (transparent research practices). Involvement of experts by experience helps ensure that clinical and health research is relevant, ethical and accessible. While public contributors are likely to view co-production as important, what do public contributors know and think about other open research practices (e.g., pre-registration, data sharing)? We carried out a mixed methods online survey investigating what public contributors already know and would like to know about different open research practices, working with public contributors to shape the study. The 64 participants had a range of lived experience, which they had contributed to research and were passionate about the benefits of co-production. Although many participants did not know the term 'open research', they rated specific practices as familiar and important, seeing the moral imperative. Participants described the balance of practical benefits (e.g., efficiency, transparency) and potential risks (e.g., data sharing, pre-prints). Some practices (e.g., pre-registration) were less well understood, and participants learnt more about open research from the survey. Most participants were interested to learn more, and over 70% indicated an interest in further training. Overall, there is a need and an opportunity to share accessible information and training about open research with those who contribute their lived experience to research. This has the potential to improve research involvement and co-production, as well as the quality and applicability of research more broadly.
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This study aimed to understand how caregivers of people living with spinal cord injury (SCI) experience and carry secondary trauma, and how this shapes role identity and emotional wellbeing. It focused on the psychological toll of caregiving, highlighting needs that remain unsupported. Twenty-three SCI caregivers participated in in-depth semi-structured interviews. Data were analysed using Reflective Thematic Analysis to understand recurring emotional and psychological challenges across the caregiving journey. Five themes emerged: (1) SCI reality uncovered, confronting the gap between expectations and lived reality; (2) Shared traumatisation, describing caregivers' exposure to acute trauma and emotional burden alongside the person living with SCI; (3) The sidelined supporter, reflecting systemic invisibility across care contexts; (4) Masking mental health, involving the concealment of personal distress; and (5) Demanding a discharge toolkit, underscoring the desire to access adequate post-discharge support. Caregivers described persistent emotional suppression, role loss, and social isolation. Caregivers carry emotional strain that is internalised, and rarely acknowledged. Their needs are frequently silenced, by their own efforts to stay strong and systems that overlook them. Addressing this burden demands the embedding of dedicated caregiver support into rehabilitation, with sustained attention to the emotional demands of long-term care. Caregivers perceived that supporting a person living with spinal cord injury involved sustained psychological strain that was often unacknowledged and unsupported within rehabilitation pathways.Caregivers described the hospital-to-home transition as fragmented and emotionally challenging, particularly due to insufficient information, limited mental health support, and a lack of structured follow-up after discharge.Addressing caregivers’ mental health needs requires the integration of formal support at the point of discharge alongside ongoing access to peer-based networks and outpatient rehabilitation services.Rehabilitation services should broaden their focus to include caregivers as active stakeholders whose wellbeing is central to the sustainability of home-based spinal cord injury care.
A novel long-acting HIV oral pre-exposure prophylaxis (PrEP) implant was first tested in a Phase I clinical trial in South Africa, and this study sought to understand motivations behind trial participants enrolment, highlighting considerations for recruitment in future studies. Qualitative research was conducted using in-depth interviews (IDIs) with 29 study participants, 18 of whom also participated in focus group discussions (FGDs). Participants were all Black, African women with median (IQR) age 26 (21.5-29.5) years. Of the 29 participants interviewed, 27 (93%) mentioned intrinsic motivations for enrolling on the trial, including wanting to be part of HIV prevention efforts for the benefit of others and contributing to new knowledge. Eight participants (28%) highlighted extrinsic motivations, including personal health benefits and financial benefits. Most participants noted these extrinsic benefits in conjunction with the intrinsic benefits, while just two participants (7%) mentioned only extrinsic benefits as their motivations for enrolling. The analysis reveals that early-phase trial participation was shaped predominantly by intrinsic motivations, such as contributing to scientific knowledge, personal growth and community responsibility, underscoring the importance of recognising participants' values in trial design and engagement.
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Medical genetics and genomics (MGG) is one of many clinical specialties impacted by racial and ethnic disparities in healthcare access, experience, and outcomes. We explored US MGG residents' perceived gaps in knowledge regarding race and ethnicity related issues in clinical settings and their recommendations for supporting trainees in navigating such issues. From November 2022 to March 2023, US MGG residents were recruited for semi-structured interviews via email and social media. Using inductive coding reliability thematic analysis, key themes were identified and interpreted: (1) there is a lack of formal education on race and ethnicity related issues tailored to MGG residency curricula; (2) MGG residents struggle with implementing culturally informed genetic counseling and combating racial/ethnic prejudice in their clinical practice; (3) formal education on race and ethnicity related issues in MGG should be interactive, collaborative, and accessible to providers at all levels of training. Our findings highlight potential areas for improvement that may aid MGG providers and other medical specialties in delivering more just and equitable clinical care.
The incidence of early-onset colorectal cancer is rising, yet survivorship care guidelines rarely address concerns unique to younger adults. Although treatment for colorectal cancer can have devastating consequences related to sexual function and fertility, these issues remain underrecognized and seldom addressed. To better understand the impact of colorectal cancer diagnosis and treatment on sexual and reproductive health. Qualitative study of patients with early-onset colorectal cancer. Semi-structured one-to-one Zoom interviews of patients recruited through convenience sampling from 7 academic institutions. Sixty-three individuals diagnosed with colorectal cancer aged 50 years or younger were interviewed between March 2021 and August 2024. Patient perspectives regarding the sexual and reproductive health impacts of colorectal cancer diagnosis and treatment. Data were analyzed iteratively using directed and conventional qualitative content analysis. Participants discussed sexual and reproductive health side effects resulting from surgery, chemotherapy, and radiation. These side effects ranged in severity, with some experiencing almost none and others facing significant issues. They identified several domains, including surgical and treatment side effects, psychological impacts, effects on relationships, and unmet needs. Subdomains included sexual health, reproductive health, emotional distress, body image, communication challenges, impacts on dating, informational needs, financial support, and consultations. Participants were recruited from academic medical centers only, and as such, responses may not reflect the experiences of those cared for in nonacademic settings. Sexual and reproductive health are critical but often overlooked concerns among younger patients with CRC, with significant impacts on physical functioning, partner relationships, and psychological well-being. Current survivorship guidelines fail to adequately address these needs. Our findings highlight the importance of pretreatment counseling and fertility preservation as well as the need for ongoing mental health support during and after cancer treatment. See Video Abstract . ANTECEDENTES:La incidencia del cáncer colorrectal de aparición temprana está aumentando, pero las directrices sobre cuidados para supervivientes rara vez abordan las preocupaciones específicas de los adultos jóvenes. Aunque el tratamiento del cáncer colorrectal puede tener consecuencias devastadoras para la función sexual y la fertilidad, estas cuestiones siguen sin reconocerse lo suficiente y rara vez se abordan.OBJETIVO:Comprender mejor el impacto del diagnóstico y el tratamiento del cáncer colorrectal en la salud sexual y reproductiva.DISEÑO:Estudio cualitativo de pacientes con cáncer colorrectal de aparición temprana.ENTORNO:Entrevistas individuales semiestructuradas por Zoom a pacientes reclutados mediante muestreo por conveniencia en siete instituciones académicas.PACIENTES:Se entrevistó a 63 personas diagnosticadas con cáncer colorrectal antes de los 50 años entre marzo de 2021 y agosto de 2024.PRINCIPALES MEDIDAS DE RESULTADOS:Perspectivas de los pacientes sobre el impacto del diagnóstico y el tratamiento del cáncer colorrectal en la salud sexual y reproductiva. Los datos se analizaron de forma iterativa mediante un análisis de contenido cualitativo dirigido y convencional.RESULTADOS:Los participantes discutieron los efectos secundarios en la salud sexual y reproductiva derivados de la cirugía, la quimioterapia y la radiación. Estos efectos secundarios variaban en gravedad, ya que algunos no experimentaban casi ninguno y otros se enfrentaban a problemas importantes. Identificaron varios ámbitos, entre ellos los efectos secundarios de la cirugía y el tratamiento, las repercusiones psicológicas, los efectos en las relaciones y las necesidades no satisfechas. Los subámbitos incluían la salud sexual, la salud reproductiva, el malestar emocional, la imagen corporal, los problemas de comunicación, las repercusiones en las relaciones sentimentales, las necesidades de información, el apoyo financiero y las consultas.LIMITACIONES:Los participantes fueron reclutados únicamente en centros médicos académicos, por lo que es posible que las respuestas no reflejen las experiencias de las personas atendidas en entornos no académicos.CONCLUSIONES:La salud sexual y reproductiva son cuestiones fundamentales, pero a menudo se pasan por alto entre los pacientes jóvenes con CCR, con repercusiones significativas en el funcionamiento físico, las relaciones de pareja y el bienestar psicológico. Las directrices actuales para la supervivencia no abordan adecuadamente estas necesidades. Nuestros hallazgos ponen de relieve la importancia del asesoramiento previo al tratamiento y la preservación de la fertilidad, así como la necesidad de un apoyo continuo a la salud mental durante y después del tratamiento del cáncer. (AI-generated translation ).
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Redirected walking (RDW) allows people to explore large virtual environments while walking within a smaller physical space. When physical space is limited, explicit resets such as turn-in-place are unavoidable. Previous studies have reduced the frequency of resets by adjusting user paths. However, resets remain necessary under severe spatial constraints. The frequent use of turn-in-place resets interrupts locomotion and can degrade task performance and user experience. We present Non-Euclidean Portal Reset (NEPR), a reset technique that enables continuous experiences without pausing the user's walking. When a collision risk is detected, NEPR opens a virtual portal leading to a short, non-Euclidean corridor. Traversing the corridor repositions and reorients the user. The exit returns the user near the point of interest target in the primary world, maintaining flow. To evaluate the effectiveness of NEPR, we conducted user experiments comparing (1) the conventional turn-in-place reset, (2) NEPR, and (3) a hybrid method combining both approaches. Our results demonstrate that NEPR and the combined technique significantly improve the user experience and task performance compared to the traditional method. Overall, NEPR reframes resets as seamless transitions rather than interruptions, enhancing the practicality of RDW.
People living with HIV (PLWH) experiencing chronic poverty may divert their antiretroviral therapy (ART) as an economic survival strategy, yet their lived experiences remain under examined. We conducted a phenomenological analysis of in-depth interviews with Black and Latino (N = 38) PLWH from two trials using the Intervention Innovations Team's Integrated Conceptual Model (IIT-ICM), which centers systemic and socioeconomic inequities in HIV care. Participants (74% cisgender men; 84% Black, mean age 48 years) reported high rates of food insecurity (85%), unemployment (90%), and unstable housing (52%), moderate-to-high-risk substance use (57% alcohol, 52% cannabis, 48% cocaine), and 76% reported past substance use treatment. Through inductive analysis of participant interviews, we identified three interrelated diversion processes: (1) Commodification, the transformation of prescribed medication into a material resource within informal or underground markets; (2) Navigation, the strategic management of care and survival within and against institutional systems; and (3) Reorientation, shifts in how individuals relate to treatment and its value over time, shaped by changing material, health, and emotional conditions. We characterize these processes as the "Economies of Diversion" model. By framing ART diversion as a structurally driven adaptive strategy, this work reveals how socioeconomically marginalized Black and Latino PLWH reconcile ART adherence guidelines with urgent material demands. Findings highlight the need to integrate economic supports, expand pharmacy-based financial incentives as harm-reduction alternatives, adopt autonomy-affirming clinical approaches, invest in upstream social protections, and pair long-acting injectable rollouts with economic benefits. Importantly, the Economies of Diversion model may also apply to other forms of medication diversion.
The disease burden of malignant brain tumours poses significant challenges to both patients and their family caregivers. Even years post-bereavement, neuro-oncology caregivers can suffer serious and long-lasting adverse outcomes. A previous quantitative survey (reported separately) highlighted significant challenges experienced by bereaved neuro-oncology caregivers. This current work explored these issues further through focus groups. To identify opportunities to enhance support, we investigated caregiver experiences during the patient's end-of-life phase, the dying process, and post-bereavement outcomes. Focus groups as a component of a sequential mixed-methods study designed together with bereaved caregivers. We performed online focus groups covering the end-of-life phase, the period surrounding the patient's death, and their post-bereavement outcomes. Sampled from survey respondents, caregivers who were ≥6 months post-bereavement were invited to take part in online focus groups. Following audio transcription, data were analysed using reflexive thematic analysis. In three groups, 7 female (64%) and 4 male (36%) caregivers (55% partners of patients) of deceased patients diagnosed with glioblastoma were interviewed. Themes covered 1) care experiences in the end-of-life phase (covering communication, information, support needs, and balancing family dynamics), 2) caregiver experiences surrounding patient death, and 3) immediate and longer-term post-bereavement outcomes (covering complex and conflicting emotional responses, expectations and strategies to cope with grief, and the value of formal and informal support). Findings highlight ongoing significant and unmet emotional support needs of bereaved neuro-oncology caregivers. Caregivers want and deserve to be proactively offered adequate and timely support which could limit the long-lasting adverse impact of providing care. Brain tumours place a heavy emotional and practical burden on family caregivers. Many caregivers experience lasting difficulties that can continue after the patient’s death. This study explored caregivers’ experiences during the patient’s end of life phase, the dying process, and life after bereavement, with the aim of identifying opportunities to improve support. We did online focus groups following a survey (reported elsewhere). Caregivers who were at least six months post‑bereavement were invited to participate. In total, 11 caregivers took part across three focus groups; most were women, and over half were partners of the patient. All had cared for someone diagnosed with glioblastoma. Discussions were audiorecorded, transcribed, and analysed using thematic analysis. Three main themes were identified. First, caregivers described their experiences during the end of life phase, highlighting challenges related to communication, access to information, unmet support needs, and managing family relationships alongside caregiving responsibilities. Second, caregivers shared their experiences surrounding the patient’s death, which was often described as intense and emotionally challenging. Third, caregivers reflected on their immediate and longer term bereavement experiences, including complex and sometimes conflicting emotions, expectations around grief, personal coping strategies, and the perceived value of both formal and informal support. Overall, the findings demonstrate substantial and ongoing emotional support needs among bereaved neurooncology caregivers. Caregivers emphasised the importance of being proactively offered timely and appropriate support, which may help reduce the long term negative effects associated with caring for someone with a brain tumour.
Medical education has been experiencing a transition from time- to competency-based. Since their introduction by Olle ten Cate in 2005, entrustable professional activities are a part of this process. We implemented a set of EPAs for the first 3 years of training at our hospital, encompassed by informational materials for trainees and supervisors. Our objective was to assess barriers and facilitators for the implementation of entrustable professional activities in pediatric residency in a German tertiary hospital. Furthermore, our aim was to explore how they foster self-regulated learning and feedback, and to identify barriers and facilitators on the path to more confidence and safety. We applied a qualitative approach with focus-group discussions (adhering to COREQ guidelines), 3 each with residents and supervisors. Focus groups were recorded, transcribed verbatim, and de-identified. Data analysis was conducted based on qualitative content analysis. Three months after the implementation, no resident had fulfilled the required assessments. In the discussions, we identified barriers to and facilitators of the process. Both may be attributed to internal and external factors. The concept was supported by residents and supervisors, but time, priorities in the clinical routine, lack of initiative, and an inhibition on the part of the residents to approach the supervisors were the main reasons for the concept to fail. We identified a higher degree of structure, as well as commitment and accountability, as possible facilitators. Entrustable professional activities are a promising means of promoting self-regulated learning and a positive feedback culture to increase confidence and safety in clinical practice. Our findings expose the factors that disrupt or promote this process. Our data provide guidance for implementation in a setting with little experience with this tool.