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1.
J Patient Exp ; 11: 23743735241272226, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39148749

RESUMEN

Few studies have investigated parent's experiences with racism in the neonatal intensive care unit (NICU). Our objective was to explore how parents perceive their interactions with NICU staff and if/how racism in the NICU was experienced. Parents of infants receiving care in an urban NICU completed fixed choice surveys regarding their experiences and demographics, with 6 open-ended questions to elaborate on their fixed-choice responses. Using a constant comparative method informed by Constructivist Grounded Theory, we identified 3 main themes from the comments provided by 97 respondents: Care and harm coexisting, racism often manifesting as neglectful care, and the power differential is most impactful during times of parent advocacy. Parents spoke positively regarding their experiences and also reported disparate treatment attributed to their racial/ethnic identity. Racism was experienced by inappropriate comments and apathy toward parent requests, occurring during intimate interactions between staff and parents. Descriptions of parental advocacy efforts highlighted the lack of power they held in relation to the NICU staff. We recommend strengthening the focus on equity and mitigating power imbalances in the NICU.

3.
Indian J Otolaryngol Head Neck Surg ; 76(4): 3730-3734, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39130258

RESUMEN

In the recent past, in order to achieve our national goal of 'health for all', National Medical Commission and Government of India made competency based medical education (CBME) mandatory in all Indian medical colleges. By undergoing CBME, the Indian Medical Graduate is expected to achieve the five roles of Clinician, Communicator, Leader and Member of the health care, Professional and Lifelong learner. This article is an overview of CBME, its relevant terminologies and knowledge-gaps. The purpose is to share these changes in medical education with practicing Otolaryngologists of India. It also discusses the various challenges regarding this already- suggested implementation process for clinical academicians, which could be counterproductive to the expected national aim and goal.

4.
Med Anthropol ; : 1-15, 2024 Aug 07.
Artículo en Inglés | MEDLINE | ID: mdl-39110869

RESUMEN

We draw on ethnographic fieldwork conducted in Brussels (Belgium) on the health care experiences of undocumented migrants. We explore the implications of the double position of the ethnographer, who is both a researcher and a practicing doctor. We describe how the intimate knowledge the ethnographer-cum-clinician holds about the health care system influenced and shaped the data collection, analysis and subsequent policy recommendations. We examine the ethical dilemmas in conducting research from an engaged position about care practices toward vulnerable populations in one's own professional field. We conclude with recommendations on how to challenge and interrupt complexities faced by multi-positioned ethnographers.

5.
Schizophr Bull ; 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39088730

RESUMEN

BACKGROUND: Cognitive impairment associated with schizophrenia (CIAS) negatively impacts daily functioning, quality of life, and recovery, yet effective pharmacotherapies and practical assessments for clinical practice are lacking. Despite the pivotal progress made with establishment of the Measurement and Treatment Research to Improve Cognition in Schizophrenia (MATRICS) Consensus Cognitive Battery (MCCB) for clinical research, implementation of the full MCCB is too time-consuming and cost-ineffective for most clinicians in clinical practice. STUDY DESIGN: Here we discuss current assessments in relation to delivery format (interview-based and performance-based), validity, ease of use for clinicians and patients, reliability/reproducibility, cost-effectiveness, and suitability for clinical implementation. Key challenges and future opportunities for improving cognitive assessments are also presented. STUDY RESULTS: Current assessments that require 30 min to complete would have value in clinical settings, but the associated staff training and time required might preclude their application in most clinical settings. Initial profiling of cognitive deficits may require about 30 min to assist in the selection of evidence-based treatments; follow-up monitoring with brief assessments (10-15 min in duration) to detect treatment-related effects on global cognition may complement this approach. Guidance on validated brief cognitive tests for the strategic monitoring of treatment effects on CIAS is necessary. CONCLUSIONS: With increased advancements in technology-based and remote assessments, development of validated formats of remote and in-person assessment, and the necessary training models and infrastructure required for implementation, are likely to be of increasing clinical relevance for future clinical practice.

6.
BMC Public Health ; 24(1): 2081, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39090594

RESUMEN

BACKGROUND: Effective education is considered by the American Heart Association (AHA) as a vital variable in improving outcomes of cardiac arrest. Studies have shown that the level of knowledge and attitude of non-healthcare providers towards resuscitation training varies widely across the globe. While some training methods and barriers to training have been discussed, the literature is still quite vague and unclear regarding resuscitation training, particularly in the Middle East. This study's focus on the efficacy of resuscitation training in this region of the world may help dictate how to better implement education initiatives aimed towards non-healthcare providers in developing countries. METHODOLOGY: A systematic review and meta-analysis were conducted on studies published from inception until March 2023. Observational studies assessing CPR knowledge and skills among non-healthcare workers in Arab countries were included. Data were extracted from PubMed, Cochrane Library, EMBASE, Web of Science, and Scopus. Data analysis was performed using Rstudio with a random effects model. RESULTS: 50 studies were included in this review and meta-analysis, revealing that 55% of participants had prior knowledge of CPR, while only 28% considered their knowledge sufficient. The majority (76%) supported mandatory CPR training, and 86% were willing to attend training if offered. This study found that prior knowledge of cardiopulmonary resuscitation (CPR) varied among populations. This meta-analysis also compiled results regarding CPR technique defined by correct compression to ventilation ratio, compression depth, compression rate, location of chest compression, and correct sequence. The overall results from this meta-analysis showed that, of these factors, compression rate and depth were the two factors that were most often administered incorrectly. In all, the results from this study demonstrated that CPR training in Arab countries was favorably viewed overall, with the majority of participants indicating both support for mandatory CPR training and general willingness to attend training if offered the opportunity. CONCLUSION: Given the overall positive view and willingness to learn CPR skills, healthcare policy makers should adopt a more comprehensive focus on strategies that enhance the accessibility and opportunity for CPR training for non-healthcare populations in Arab countries. Future training programs should implement strategies to highlight the ideal combination of compression rates and depth to learners to ensure correct and efficacious delivery of CPR with increased focus on the practical portion during refresher courses to promote retention.


Asunto(s)
Reanimación Cardiopulmonar , Conocimientos, Actitudes y Práctica en Salud , Reanimación Cardiopulmonar/educación , Humanos , Medio Oriente
7.
Artículo en Inglés | MEDLINE | ID: mdl-39090522

RESUMEN

This paper argues that one aspect of re-imagining evaluation in health planning and management is for leaders and clinicians to develop comfort with vulnerability when engaging in service evaluations. Starting with an exploration of how the service user voice is traditionally expressed in healthcare evaluation, the paper then proceeds to explore the particular role and challenges faced by clinician-evaluators, including their role as 'privileged interlocutors' in conversations with service users. The tensions in reconciling the role of the clinician as an expert, with the related but different skills needed for effective discourse in qualitative evaluation are explored, and it is asserted that it is important for clinicians and leaders to be comfortable in showing and working with vulnerability when evaluating healthcare interventions. Clinicians are already skilled in holding discourse with service users, and extending the communication repertoire to include the management of emotion and expression of vulnerability is achievable and rewarding. The paper concludes that the ability to hold a vulnerable stance when conducting evaluation can have benefits in reducing defensiveness, encouraging a truer sense of enquiry and amplifying the service user voice.

8.
Mov Disord ; 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39092513

RESUMEN

BACKGROUND: Patient-rated motor symptoms (PRMS) and clinician-rated motor symptoms (CRMS) often differ in Parkinson's disease (PD). OBJECTIVE: Our goal was to investigate the determinants and clinical implications of PRMS compared with CRMS in PD. METHODS: This retrospective, observational cohort study analyzed the cross-sectional associations and longitudinal impacts of PRMS as assessed by the Movement Disorders Society-sponsored Unified PD Rating Scale (MDS-UPDRS) part 2, while controlling for CRMS measured by MDS-UPDRS part 3. Longitudinal analyses used Cox proportional hazards models and multiple linear mixed-effects random intercepts/slope models, adjusting for many clinical predictors. We conducted propensity score matching (PSM) to reinforce our analyses' robustness and surface-based morphometry to investigate neural correlates. RESULTS: We enrolled 442 patients with early-stage PD. At baseline, regardless of CRMS, PRMS were associated with the severity of postural instability and gait disturbance (PIGD). Notably, PRMS independently and more accurately predicted faster long-term deterioration in motor function than CRMS (Hoehn and Yahr 4, adjusted hazard ratio per +1 point = 1.19 [95% confidence intervals, 1.08-1.32]), particularly in PIGD (PIGD subscore, ß-interaction = 0.052 [95% confidence intervals, 0.018-0.086]). PSM confirmed these findings' robustness. Surface-based morphometry suggested that enhanced sensory processing was distinctively associated with PRMS. CONCLUSIONS: In early-stage PD, PRMS weighed different aspects of symptoms and more effectively predicted motor deterioration compared to CRMS, with distinctive brain structural characteristics. The superior sensitivity of PRMS to subtle declines in drug-refractory symptoms like PIGD likely underlie our results, highlighting the importance of understanding the differential clinical implications of PRMS to prevent long-term motor deterioration. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

9.
J Neuromuscul Dis ; 2024 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-39093077

RESUMEN

Background: Duchenne muscular dystrophy (DMD) is a progressive, life-limiting, neuromuscular disorder. Clinicians play an important role in informing families about therapy options, including approved gene therapies and clinical trials of unapproved therapies. Objective: This study aimed to understand the perspectives of clinicians about gene therapy for DMD, which has not previously been studied. Methods: We conducted interviews with specialist clinicians treating patients with DMD in the United States (n = 8) and United Kingdom (n = 8). Interviews were completed in 2022, before any approved gene therapies, to gain insight into barriers and facilitators to implementing gene therapy and educational needs of clinicians. Results: Most respondents expressed cautious optimism about gene therapy. Responses varied regarding potential benefits with most expecting delayed progression and duration of benefit (1 year to lifelong). Concern about anticipated risks also varied; types of anticipated risks included immunological reactions, liver toxicity, and cardiac or renal dysfunction. Clinicians generally, but not uniformly, understood that gene therapy for DMD would not be curative. Most reported needing demonstrable clinical benefit to justify treatment-related risks. Conclusions: Our data demonstrate variability in knowledge and attitudes about gene therapy among clinicians who follow patients with DMD. As our knowledge base about DMD gene therapy grows, clinician education is vital to ensuring that accurate information is communicated to patients and families.

10.
JMIR Med Educ ; 10: e51740, 2024 Aug 07.
Artículo en Inglés | MEDLINE | ID: mdl-39110488

RESUMEN

BACKGROUND: Clinician educators are experts in procedural skills that students need to learn. Some clinician educators are interested in creating their own procedural videos but are typically not experts in video production, and there is limited information on this topic in the clinical education literature. Therefore, we present a tutorial for clinician educators to develop a procedural video. OBJECTIVE: We describe the steps needed to develop a medical procedural video from the perspective of a clinician educator new to creating videos, informed by best practices as evidenced by the literature. We also produce a checklist of elements that ensure a quality video. Finally, we identify the barriers and facilitators to making such a video. METHODS: We used the example of processing a piece of skeletal muscle in a pathology laboratory to make a video. We developed the video by dividing it into 3 phases: preproduction, production, and postproduction. After writing the learning outcomes, we created a storyboard and script, which were validated by subject matter and audiovisual experts. Photos and videos were captured on a digital camera mounted on a monopod. Video editing software was used to sequence the video clips and photos, insert text and audio narration, and generate closed captions. The finished video was uploaded to YouTube (Google) and then inserted into open-source authoring software to enable an interactive quiz. RESULTS: The final video was 4 minutes and 4 seconds long and took 70 hours to create. The final video included audio narration, closed captioning, bookmarks, and an interactive quiz. We identified that an effective video has six key factors: (1) clear learning outcomes, (2) being engaging, (3) being learner-centric, (4) incorporating principles of multimedia learning, (5) incorporating adult learning theories, and (6) being of high audiovisual quality. To ensure educational quality, we developed a checklist of elements that educators can use to develop a video. One of the barriers to creating procedural videos for a clinician educator who is new to making videos is the significant time commitment to build videography and editing skills. The facilitators for developing an online video include creating a community of practice and repeated skill-building rehearsals using simulations. CONCLUSIONS: We outlined the steps in procedural video production and developed a checklist of quality elements. These steps and the checklist can guide a clinician educator in creating a quality video while recognizing the time, technical, and cognitive requirements.


Asunto(s)
Grabación en Video , Humanos , Competencia Clínica , Educadores en Salud , Enseñanza
11.
Parasitol Int ; 103: 102952, 2024 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-39179199

RESUMEN

In Japan, parasitic diseases are rare today, with the exception of amebiasis and anisakidosis. As a result, many Japanese clinicians have limited knowledge of parasitic diseases and do not consider them important. Parasitology departments in the schools of medicine in Japan have tended to be replaced or downsized, and the amount of time spent for the teaching of parasitology to undergraduate students has been shortened. However, even in Japan, patients with parasitic diseases visit clinics or hospitals. Medical students have to learn the diagnosis and basic treatment of parasitic diseases that could cause death or serious sequelae without proper treatment, and those which are relatively frequently encountered in Japan. It is also essential for the students to know the circumstances they should suspect parasitic diseases. There is nothing restricting a parasitologist from responding to questions and requests from clinicians regarding diagnosis and treatment; rather, it is in the best interest of patients with parasitic diseases to do so based on their professional knowledge.

12.
Artículo en Inglés | MEDLINE | ID: mdl-39155615

RESUMEN

OBJECTIVES: To investigate the approach taken by clinicians involved in the diagnosis and management of individuals with Differences of Sex Development (DSD), particularly with regard to genomic testing, and identify perceived gaps/strengths/barriers in current practice. DESIGN AND METHODS: An anonymous online survey was developed, with questions exploring demographics, perceptions of genomic testing, availability of genetics services and opinions on the role and utility of genomic testing in DSD. All responses were anonymous. Clinicians involved in the diagnosis and management of individuals with DSD were recruited from relevant societies and departments across Australia and New Zealand. RESULTS: 79 eligible clinicians commenced the survey, with 63 completing it and 16 providing a partial response. The perceived benefit of having a genetic diagnosis for DSD was almost unanimous (97%). Almost half (48%) of respondents reported barriers in genomic testing. 81% of respondents reported they order genomic tests currently. Approaches to genomic testing when faced with four different clinical scenarios varied across respondents. Clinicians perceived genomic testing to be underutilised (median 36 on sliding scale from 0 to 100). CONCLUSIONS: Despite 97% of respondents reporting benefit of a genetic diagnosis for individuals with DSD, this was not reflected throughout the survey with regard to clinical implementation. When faced with clinical scenarios, the recommendations for genomic testing from respondents was much lower, indicating the discrepancy between perception and clinical practice. Genomic testing in the context of DSD is seen as both beneficial and desired, yet there are multiple barriers impacting its integration into standard clinical care.

13.
Nutr Clin Pract ; 2024 Aug 17.
Artículo en Inglés | MEDLINE | ID: mdl-39152798

RESUMEN

BACKGROUND: Evidence-based guidelines (EBGs) in the nutrition management of advanced liver disease and enhanced recovery after surgery recommendations state that normal diet should recommence 12-24 h following liver transplantation. This study aimed to compare postoperative nutrition practices to guideline recommendations, explore clinician perceptions regarding feeding after transplant surgery, and implement and evaluate strategies to improve postoperative nutrition practices. METHODS: A pre-post multimethod implementation study was undertaken, guided by the knowledge-to-action framework. A retrospective chart audit of postoperative dietary practice and semistructured interviews with clinicians were undertaken. Implementation strategies were informed by the Consolidated Framework for Implementation Research-Expert Recommendations for Implementing Change matching tool and then evaluated. RESULTS: An evidence-practice gap was identified, with the median day to initiation of nutrition (free-fluid or full diet) on postoperative day (POD) 2 and only 25% of patients aligning with the EBGs. Clinician interviews identified belief in the importance of nutrition, with variation in surgical practice in relation to early nutrition, competing clinical priorities, and vulnerabilities in communication contributing to delays in returning to feeding. An endorsed postoperative nutrition protocol was implemented along with a suite of theory- and stakeholder-informed intervention strategies. Following implementation, the median time to initiate nutrition reduced to POD1 and alignment with EBGs improved to 60%. CONCLUSION: This study used implementation frameworks and strategies to understand, implement, and improve early feeding practices in line with EBGs after liver transplant. Ongoing sustainability of practice change as well as the impact on clinical outcomes have yet to be determined.

14.
J Med Internet Res ; 26: e57721, 2024 Jul 24.
Artículo en Inglés | MEDLINE | ID: mdl-39047282

RESUMEN

BACKGROUND: Discharge letters are a critical component in the continuity of care between specialists and primary care providers. However, these letters are time-consuming to write, underprioritized in comparison to direct clinical care, and are often tasked to junior doctors. Prior studies assessing the quality of discharge summaries written for inpatient hospital admissions show inadequacies in many domains. Large language models such as GPT have the ability to summarize large volumes of unstructured free text such as electronic medical records and have the potential to automate such tasks, providing time savings and consistency in quality. OBJECTIVE: The aim of this study was to assess the performance of GPT-4 in generating discharge letters written from urology specialist outpatient clinics to primary care providers and to compare their quality against letters written by junior clinicians. METHODS: Fictional electronic records were written by physicians simulating 5 common urology outpatient cases with long-term follow-up. Records comprised simulated consultation notes, referral letters and replies, and relevant discharge summaries from inpatient admissions. GPT-4 was tasked to write discharge letters for these cases with a specified target audience of primary care providers who would be continuing the patient's care. Prompts were written for safety, content, and style. Concurrently, junior clinicians were provided with the same case records and instructional prompts. GPT-4 output was assessed for instances of hallucination. A blinded panel of primary care physicians then evaluated the letters using a standardized questionnaire tool. RESULTS: GPT-4 outperformed human counterparts in information provision (mean 4.32, SD 0.95 vs 3.70, SD 1.27; P=.03) and had no instances of hallucination. There were no statistically significant differences in the mean clarity (4.16, SD 0.95 vs 3.68, SD 1.24; P=.12), collegiality (4.36, SD 1.00 vs 3.84, SD 1.22; P=.05), conciseness (3.60, SD 1.12 vs 3.64, SD 1.27; P=.71), follow-up recommendations (4.16, SD 1.03 vs 3.72, SD 1.13; P=.08), and overall satisfaction (3.96, SD 1.14 vs 3.62, SD 1.34; P=.36) between the letters generated by GPT-4 and humans, respectively. CONCLUSIONS: Discharge letters written by GPT-4 had equivalent quality to those written by junior clinicians, without any hallucinations. This study provides a proof of concept that large language models can be useful and safe tools in clinical documentation.


Asunto(s)
Alta del Paciente , Humanos , Alta del Paciente/normas , Registros Electrónicos de Salud/normas , Método Simple Ciego , Lenguaje
15.
Patient Educ Couns ; 127: 108362, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-38981404

RESUMEN

The assessment of medical decision-making capacity as part of the process of clinical informed consent has been considered a bioethical housekeeping matter for decades. Yet in practice, the reality bears little resemblance to what is described in the medical literature and professed in medical education. Most literature on informed consent refers to medical decision-making capacity as a precondition to the consent process. That is, a clinician must first determine if a patient has capacity, and only then may the clinician engage with the patient for the rest of informed consent. The problem with this two-step approach is that it makes no sense in actual practice. We see the assessment of medical decision-making capacity within the process of informed consent as a spiral staircase, not just two steps, requiring clinicians to keep circling up and around, making progress, until they get to where they need to be: 1. Clinicians start with a general presumption of capacity for most adults, sometimes having a provisional appraisal of capacity based on prior patient contact. 2. Then, they begin performing informed consent for the current situation and intervention options. 3. Next, they must reassess capacity during this process. 4. After that, they continue with informed consent. 5. If capacity is not yet clear, they repeat 1-4.


Asunto(s)
Toma de Decisiones , Consentimiento Informado , Competencia Mental , Humanos , Relaciones Médico-Paciente , Toma de Decisiones Clínicas , Participación del Paciente
16.
J Med Internet Res ; 26: e56095, 2024 Jul 15.
Artículo en Inglés | MEDLINE | ID: mdl-39008341

RESUMEN

BACKGROUND: Digital tools are progressively reshaping the daily work of health care professionals (HCPs) in hospitals. While this transformation holds substantial promise, it leads to frustrating experiences, raising concerns about negative impacts on clinicians' well-being. OBJECTIVE: The goal of this study was to comprehensively explore the lived experiences of HCPs navigating digital tools throughout their daily routines. METHODS: Qualitative in-depth interviews with 52 HCPs representing 24 medical specialties across 14 hospitals in Switzerland were performed. RESULTS: Inductive thematic analysis revealed 4 main themes: digital tool use, workflow and processes, HCPs' experience of care delivery, and digital transformation and management of change. Within these themes, 6 intriguing paradoxes emerged, and we hypothesized that these paradoxes might partly explain the persistence of the challenges facing hospital digitalization: the promise of efficiency and the reality of inefficiency, the shift from face to face to interface, juggling frustration and dedication, the illusion of information access and trust, the complexity and intersection of workflows and care paths, and the opportunities and challenges of shadow IT. CONCLUSIONS: Our study highlights the central importance of acknowledging and considering the experiences of HCPs to support the transformation of health care technology and to avoid or mitigate any potential negative experiences that might arise from digitalization. The viewpoints of HCPs add relevant insights into long-standing informatics problems in health care and may suggest new strategies to follow when tackling future challenges.


Asunto(s)
Investigación Cualitativa , Humanos , Suiza , Entrevistas como Asunto , Hospitales , Femenino , Masculino , Personal de Salud/psicología , Flujo de Trabajo , Atención a la Salud
17.
JMIR Form Res ; 8: e50751, 2024 Jul 17.
Artículo en Inglés | MEDLINE | ID: mdl-39018095

RESUMEN

BACKGROUND:  Telemedicine expanded rapidly during the COVID-19 pandemic, as key policy changes, financial support, and pandemic fears tipped the balance toward internet-based care. Despite this increased support and benefits to patients and clinicians, telemedicine uptake was variable across clinicians and practices. Little is known regarding physician and institutional characteristics underlying this variability. OBJECTIVE:  This study aimed to evaluate factors influencing telemedicine uptake among frontline physicians in the early pandemic response. METHODS:  We surveyed a national stratified sample of frontline clinicians drawn from the American Medical Association Physician Professional Data in June or July 2020. The survey inquired about the first month and most recent month (June 2020) of pandemic telemedicine use; sample data included clinician gender, specialty, census region, and years in practice. Local pandemic conditions were estimated from county-level data on COVID-19 rates at the time of survey response. Data were analyzed in a weighted logistic regression, controlling for county-specific pandemic data, and weighted to account for survey data stratification and nonresponse. RESULTS:  Over the first 3-4 months of the pandemic, the proportion of physicians reporting use of telemedicine in >30% of visits increased from 29.2% (70/239) to 35.7% (85/238). Relative to primary care, odds of substantial telemedicine use (>30%) both during the first month of the pandemic and in June 2020 were increased among infectious disease and critical care physicians and decreased among hospitalists and emergency medicine physicians. At least minimal prepandemic telemedicine use (odds ratio [OR] 11.41, 95% CI 1.34-97.04) and a high 2-week moving average of local COVID-19 cases (OR 10.16, 95% CI 2.07-49.97) were also associated with substantial telemedicine use in June 2020. There were no significant differences according to clinician gender, census region, or years in practice. CONCLUSIONS:  Prepandemic telemedicine use, high local COVID-19 case counts, and clinician specialty were associated with higher levels of substantial telemedicine use during the early pandemic response. These results suggest that telemedicine uptake in the face of the pandemic may have been heavily influenced by the level of perceived threat and the resources available for implementation. Such understanding has important implications for reducing burnout and preparation for future public health emergencies.

18.
Res Dev Disabil ; 152: 104796, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39047661

RESUMEN

BACKGROUND: Children with Down syndrome (DS) often need support building language, socialization, and regulation, yet few receive behavioral intervention for this. The Joint Attention, Symbolic Play, Engagement and Regulation (JASPER) intervention holds promise as a clinician-caregiver-mediated approach. AIMS: The aims of this pilot study were to (1) describe the behavioral phenotype of children with DS (2) quantify change in child engagement following JASPER receipt, (3) measure caregiver adoption of JASPER strategies, and (4) generate hypotheses and directions for future research. METHODS AND PROCEDURES: Sixteen toddlers with DS and their caregivers enrolled in the study. Dyads were randomly assigned to one of two conditions: immediate intervention or waitlist control. During the COVID-19 pandemic, intervention was delivered remotely. OUTCOMES AND RESULTS: Caregivers learned to implement JASPER strategies and pilot data suggest improvements in joint engagement and regulation during play. Case series data show individual heterogeneity of intervention response. Remote intervention delivery may be associated with greater participant retention. CONCLUSIONS AND IMPLICATIONS: JASPER may be a viable treatment option to improve joint engagement and emotion regulation in young children with DS. Parents appear receptive to learning and implementing JASPER strategies at home. Remote JASPER delivery may improve participation in research or treatment programs.


Asunto(s)
Síndrome de Down , Humanos , Síndrome de Down/psicología , Proyectos Piloto , Masculino , Femenino , Preescolar , COVID-19/psicología , Atención , Regulación Emocional , Cuidadores/psicología , Lactante , Juego e Implementos de Juego/psicología , Terapia Conductista/métodos , SARS-CoV-2 , Socialización
19.
Dermatol Ther (Heidelb) ; 14(8): 2195-2208, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39008225

RESUMEN

INTRODUCTION: It remains unclear how patients with atopic dermatitis (AD) and clinicians perceive the level of patient-clinician communication and if there could be potential lapses. This cross-sectional study aims to compare perspectives between patients with AD and dermatologists regarding communication and treatment expectations in Asia. METHODS: Moderate-to-severe patients with AD and practicing dermatologists were recruited from eight Asia-Pacific territories, including Mainland China, Hong Kong, India, Japan, Singapore, South Korea, Taiwan, and Thailand. Patients and dermatologists completed separate surveys designed to elicit their expectations regarding AD management, and their perceived level of patient-clinician communication. Patients were also asked about their treatment satisfaction and whether they prefer additional treatment beyond what was prescribed. Demographic information and responses were analyzed using descriptive statistics. The study was reviewed by the institutional review board in each territory, and all participants provided informed consent. RESULTS: A total of 1103 patients and 271 dermatologists completed the surveys. Both patients and dermatologists were largely aligned in their top treatment goals in AD management. However, greater proportions of patients prioritized the prevention of exacerbation (78.0% versus 47.2%), minimization of treatment adverse effects (46.4% versus 9.1%), and improvement in mental health (16.0% versus 4.9%), compared with dermatologists. Although patient-clinician communication was observed to be generally good, 10.9% of patients reported dissatisfaction with communication in AD management. The majority of patients were either "very satisfied" or "satisfied" with their latest acute AD treatment, but 65.5% of patients still desired additional treatment. CONCLUSIONS: This multinational study has provided insights on the perspectives of Asian patients and dermatologists in treatment goals, AD management, and communication. In general, both patients and dermatologists were aligned in treatment goals and there was satisfactory patient-clinician communication in most aspects. However, potential areas of improvement have been identified to further enhance patient-centered care.

20.
Palliat Med Rep ; 5(1): 286-292, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39070964

RESUMEN

Background: Published guidelines that help clinicians identify patients who would benefit from the co-prescription of intranasal naloxone (IN) exclude "palliative care patients." In the absence of clear care standards, palliative care (PC) clinicians may experience uncertainty in how to approach IN co-prescriptions. Objective: Explore the attitudes of PC clinicians in the United States of America who work at regional health care institutions regarding IN prescriptions for patients they prescribe opioids for. Methods: An 18-question electronic survey was distributed to PC clinicians that practice at institutions in Wisconsin or Minnesota with at least 10 other PC clinicians between February and May 2023. The survey explored clinical scenarios in which respondents would and would not prescribe IN. Results: Fifty-six PC clinicians responded to the survey-response rate 41%. Most respondents (90.9%) did not feel IN prescriptions should be reserved for patients with a full code status; 67.9% of respondents felt that IN prescriptions are reasonable for certain patients with a terminal illness and comfort goals of care. Neither prognosis, duration of opioid therapy, nor dose of opioid therapy were significant factors in determining whether most respondents prescribed IN for their patients. Most respondents (81.8%) felt clinician counseling and patient consent were essential before prescribing IN. Conclusion: Most PC clinicians in our survey felt that IN prescriptions can be appropriate for patients they prescribe opioids for. Bystander safety was an emerging rationale for why respondents chose to prescribe IN for their patients. Despite public health efforts to make IN more freely available, most respondents felt clinician counseling was essential before prescribing IN for their patients.

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