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1.
J Med Internet Res ; 26: e50236, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39088259

RESUMEN

BACKGROUND: Patients increasingly rely on web-based physician reviews to choose a physician and share their experiences. However, the unstructured text of these written reviews presents a challenge for researchers seeking to make inferences about patients' judgments. Methods previously used to identify patient judgments within reviews, such as hand-coding and dictionary-based approaches, have posed limitations to sample size and classification accuracy. Advanced natural language processing methods can help overcome these limitations and promote further analysis of physician reviews on these popular platforms. OBJECTIVE: This study aims to train, test, and validate an advanced natural language processing algorithm for classifying the presence and valence of 2 dimensions of patient judgments in web-based physician reviews: interpersonal manner and technical competence. METHODS: We sampled 345,053 reviews for 167,150 physicians across the United States from Healthgrades.com, a commercial web-based physician rating and review website. We hand-coded 2000 written reviews and used those reviews to train and test a transformer classification algorithm called the Robustly Optimized BERT (Bidirectional Encoder Representations from Transformers) Pretraining Approach (RoBERTa). The 2 fine-tuned models coded the reviews for the presence and positive or negative valence of patients' interpersonal manner or technical competence judgments of their physicians. We evaluated the performance of the 2 models against 200 hand-coded reviews and validated the models using the full sample of 345,053 RoBERTa-coded reviews. RESULTS: The interpersonal manner model was 90% accurate with precision of 0.89, recall of 0.90, and weighted F1-score of 0.89. The technical competence model was 90% accurate with precision of 0.91, recall of 0.90, and weighted F1-score of 0.90. Positive-valence judgments were associated with higher review star ratings whereas negative-valence judgments were associated with lower star ratings. Analysis of the data by review rating and physician gender corresponded with findings in prior literature. CONCLUSIONS: Our 2 classification models coded interpersonal manner and technical competence judgments with high precision, recall, and accuracy. These models were validated using review star ratings and results from previous research. RoBERTa can accurately classify unstructured, web-based review text at scale. Future work could explore the use of this algorithm with other textual data, such as social media posts and electronic health records.


Asunto(s)
Algoritmos , Internet , Procesamiento de Lenguaje Natural , Humanos , Femenino , Masculino , Médicos , Relaciones Médico-Paciente , Juicio , Adulto , Persona de Mediana Edad
2.
Asian J Psychiatr ; 100: 104188, 2024 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-39089075

RESUMEN

Empirical findings suggested that anhedonia, a reduced capability to access pleasure and a core symptom in both schizophrenia and the major depressive disorder, can be present in people with high levels of social anhedonia and people with subsyndromal depression. Few studies have adopted a multidimensional framework to investigate anhedonia in these subclinical samples. We recruited 35 participants with high social anhedonia (SA), 53 participants with subsyndromal depression (SD), 20 participants with co-occurrence of both traits (CO), and 47 participants with low levels of both traits (CN) to complete a self-report questionnaire capturing the pleasure experience, and the Monetary Incentives Delay (MID) Task and the Social Incentives Delay (SID) Task capturing the motivation of reward. Results indicated that people with SA, SD and CO exhibited lower abstract anticipatory pleasure compared to CN. Moreover, people with SD and CO exhibited specific impairment in response to social incentives. Together, our findings characterized the multidimensional features of anhedonia performances of subclinical samples with SA, SD and CO, which may contribute to the formulation of early identification of at-risk groups.

3.
Psychopathology ; : 1-10, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39089226

RESUMEN

BACKGROUND: Spiritual, metaphysical, or eschatological elements in delusions (SMEDs) are frequent and often subjectively regarded as profound transformational experiences, similar to mystical experiences. This study aimed (1) to explore how SMEDs are experienced and in which aspects they are similar to mystical experiences and (2) to investigate how individuals make sense of SMED. METHODS: Seven participants were interviewed, and their expressions were analyzed using interpretative phenomenological analysis. RESULTS: We found that SMEDs were similar to mystical experiences with regard to alterations in perception of space, time, and unity. Furthermore, SMEDs were accompanied by a sense of enlightenment that however remained ineffable. SMEDs were interpreted from different viewpoints, i.e., as a source of ontological insight, as a mental health issue, as an inspiration for a new orientation in the world, and, for some participants, as an example of the limits of knowledge. Making sense of SMED appeared to follow a lively internal dialogue in which various, sometimes contradictory positions were reflected upon. Participants usually struggled to align the ostensible ontological significance of SMED to the dominating illness explanation. CONCLUSION: SMEDs have similarities to mystical experiences, but integrating SMED into one's own life is challenging. We propose a philosophical, non-pathological interpretation of SMED derived from a novel perspective on mystical experience which may also have some therapeutic utility.

4.
J Pediatr Surg ; 2024 Jul 14.
Artículo en Inglés | MEDLINE | ID: mdl-39089895

RESUMEN

BACKGROUND: This commentary discusses the social impact of bowel management programs (BMPs) on children with colorectal diseases, including anorectal malformations (ARM), Hirschsprung disease (HD), functional constipation (FC), and spina bifida. Previous studies focused on functional outcomes, but this study bridges the gap to daily life experiences. METHODS: The study examined children's experiences in BMPs, focusing on school participation, vacation ability, and overall patient experience. Cleanliness, defined as fewer than one stool soiling episode per week, was achieved by 70% of participants. RESULTS: Positive patient experiences were linked to achieving stool cleanliness, regardless of the management method. Invasive methods like enemas did not negatively affect experiences if cleanliness was maintained. Validated patient-reported experience measures (PREMs) and patient-reported outcomes measures (PROMs) were used, though the median age of 8.9 years posed limitations. CONCLUSION: The commentary highlights the significance of stool cleanliness in improving patient experiences and supports the effectiveness of various BMP methods. Future research should include longitudinal follow-ups to assess BMP durability and gather data from older children.

6.
Anat Sci Educ ; 2024 Jul 31.
Artículo en Inglés | MEDLINE | ID: mdl-39085994

RESUMEN

Despite attempts to diversify healthcare workplaces and education, racial and ethnic minorities (REM) remain underrepresented in these fields. This study investigated changes in high school students' health science interest following a single exposure, hands-on anatomy laboratory visit. One hundred and eighty-eight high school students participated in a single day, one-hour visit to a human anatomy laboratory on a university campus. Participants engaged in hands-on activities centered around both human and animal specimens led by university mentors. Using a modified Science Technology Engineering and Mathematics-Career Interest Survey (STEM-CIS) questionnaire, health science STEM interest was calculated before and after the visits and compared using a paired t-test (α = 0.05). A 2 × 2 ANOVA (α = 0.05) was run on pre-to-post-visit interest score differences with factors of Race (White/REM) and Gender (Male/Female) to determine if race/ethnicity and/or gender moderated the gains observed. Overall, health science STEM interest increased significantly from pre- to post-visit (p < 0.001), and these gains were greater in REM students (p < 0.05) but did not differ as a function of gender. These findings indicate that a single visit to an anatomy laboratory with hands-on activities can be used as a tool to engage high school aged students in STEM and may be particularly beneficial for racial/ethnic minority students, potentially influencing health science STEM interest.

7.
Health Expect ; 27(4): e14156, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39087726

RESUMEN

INTRODUCTION: There have been some concerns about the impact of temporary doctors, otherwise known as locums, on patient safety and the quality of care. Despite these concerns, research has paid little attention to the implications of locum working on patient experience. METHODS: A qualitative semi-structured interview study was conducted with 130 participants including locums, people working with locums and patients with experience of being seen or treated by locums. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge. RESULTS: Three main themes were constructed through analysis: (1) Awareness and disclosure; patients were not always aware if their doctor was a locum, and there was some debate about whether patients had a right to know, particularly if locum working presented quality and safety risks. (2) Continuity and accessibility of care; access was regarded as priority for acute conditions, but for long-term or serious conditions, patients preferred to see a permanent doctor who knew their history, although it was acknowledged that locums could provide fresh perspectives. (3) Communication and practice; locums and patients described how consultations were approached differently when doctors worked as locums. Patients evaluated their interactions based on how safe they felt with practitioners. CONCLUSION: Patients reported that they were unlikely to have continuity of care with any doctors delivering care, regardless of their contractual status. Locums sometimes provided new perspectives on care which could be beneficial for patient outcomes, but for patients with long-term, complex or serious conditions continuity of care was important, and these patients may avoid or delay seeking care when locums are the only available option. PATIENT OR PUBLIC CONTRIBUTION: Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., study protocol, participant information sheets, survey tools, interview schedules, emerging findings). Our PPI forum co-produced our patient interview schedule, two members of our PPI forum led the patient focus groups and all were involved in analysis of patient interviews. Our PPI Chair was involved in the preparation of this manuscript.


Asunto(s)
Entrevistas como Asunto , Relaciones Médico-Paciente , Investigación Cualitativa , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Satisfacción del Paciente , Accesibilidad a los Servicios de Salud , Continuidad de la Atención al Paciente , Médicos/psicología , Anciano , Calidad de la Atención de Salud , Comunicación , Seguridad del Paciente
8.
Prog Brain Res ; 287: 25-44, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39097356

RESUMEN

Research studies have focused on stimulus features as well as internal or contextual factors to understand aesthetic experience. An important question is the nature of processes that are involved in all aesthetic experiences. One possible process is "disinterested attention" that may be necessary for one to have an aesthetic experience. This can be contrasted with a perceiver who attends to an object or event only in a goal-directed or instrumental or practical manner. It has been claimed that "disinterested attention" involves attention being focused on the aesthetic object or event while being distributed across its features or components. Other ideas have focused on better reallocation of attention over time. The potential nature of attention could be linked to aspects of mindfulness. Studies looking at the effects of mindfulness on aesthetic experience have shown it increases the frequency of having aesthetic experience. The nature of attention needed for an aesthetic experience can be thought of as a form of generosity that could be linked to the notions of a gift. Mindful attention to objects or life as a gift, perhaps enables us to see objects and perhaps life itself in non-instrumental terms resulting in an aesthetic experience.


Asunto(s)
Atención , Estética , Humanos , Atención/fisiología , Atención Plena
9.
Disabil Rehabil ; : 1-12, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39087694

RESUMEN

PURPOSE: This paper aims to understand the distinctive biopsychosocial aspects and patient perspectives on chronic low back pain in Lebanon, an Arab country with a unique and rich cultural heritage. METHOD: Qualitative, semi-structured interviews with 12 Lebanese patients purposefully sampled from various governorates. The interviews included participants from different geographic areas and religions. The data underwent analysis through an inductive thematic approach guided by a bounded relativist ontology, a subjectivist epistemology, and a descriptive phenomenological framework. The coding process was managed by computer-assisted qualitative data analysis software (QSR NVivo version 12.0). RESULTS: The researchers identified and constructed two themes: (1) Chronic low back pain: understanding the impact, coping strategies, and communication patterns in lived experiences within the Lebanese context. This theme sheds light on the complexities of pain management and societal influences in Lebanon. (2) Explanatory model of patients living with chronic low back pain in Lebanon. This theme allowed an exploration of the multifaceted narratives of chronic low back pain. CONCLUSION: This study found that Lebanese individuals attribute chronic low back pain to biomedical factors despite some recognizing psychosocial elements. It emphasizes the need to educate patients on the biopsychosocial model, facilitate better care, and dispel misconceptions.


The exploration of patients' pain perception may provide an opportunity to better develop and design culturally sensitive pain neuroscience education material for Arab-speaking and Lebanese physical therapists.The rehabilitation process should incorporate a balanced biopsychosocial approach, addressing both physical and psychosocial elements of pain, to provide more effective care and outcomes for Lebanese patients who predominantly attribute chronic low back pain to biomedical factors.Lebanese healthcare professionals need to improve communication with Lebanese patients regarding the nature of chronic low back pain, using clear communication to help dispel misconceptions and enhance rehabilitation outcomes.

10.
Artículo en Inglés | MEDLINE | ID: mdl-39088140

RESUMEN

INTRODUCTION: Contraceptive counseling during the perinatal period is an important component of comprehensive perinatal care. We synthesized research about contraceptive counseling during the perinatal period, which has not previously been systematically compiled. METHODS: We developed search criteria to identify articles listed in PubMed, Embase, and Popline databases published between 1992 and July 2022 that address patients' preferences for, and experiences of, perinatal contraceptive counseling, as well as health outcomes associated with this counseling. Search results were independently reviewed by multiple reviewers to assess relevance for the present review. Methods were conducted in accordance with PRISMA guidelines. RESULTS: Thirty-four articles were included in the final full text review. Of the included articles, 10 included implementation and evaluation of a contraceptive counseling method or protocol, and 24 evaluated preferences for or experiences of existing contraceptive counseling in the perinatal period. Common themes included the acceptability of contraceptive counseling in the peripartum and postpartum periods, and a preference for contraceptive counseling at some point during the antenatal period and before the inpatient hospital experience, and direct provider-patient discussion instead of video or written material. Multiple studies suggest that timing, content, and modality should be individualized. In general, avoiding actual or perceived directiveness and providing multi-modal counseling that includes both written educational materials and patient-provider conversations was desired. DISCUSSION: The perinatal period constitutes a critical opportunity to provide contraceptive counseling that can support pregnant and postpartum people's management of their reproductive futures. The reviewed studies highlight the importance of patient-centered approach to providing this care, including flexibility of timing, content, and modality to accommodate individual preferences.

11.
BMC Nurs ; 23(1): 527, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39090643

RESUMEN

BACKGROUND: Patient experience plays an essential role in improving clinical effectiveness and patient safety. It's important to identify factors influencing patient experience and to improve quality of healthcare. OBJECTIVE: To identify factors that influence patient experience in hospital wards. METHODS: We conducted a systematic review including six databases; they were PubMed, CINAHL, Embase, PsycInfo, ProQuest, and Cochrane. Studies were included if they met the inclusion criteria. The JBI checklist was used to perform quality appraisal. We used 5 domains of the ecological model to organize and synthesize our findings to comprehensively understand the multi-level factors influencing the issue. RESULT: A total of 138 studies were included, and 164 factors were identified. These factors were integrated into 6 domains. All domains but one (survey-related factors) could be mapped onto the attributes of the ecological framework: intrapersonal, interpersonal, institutional, community, and public policy level factors. All factors had mixed effect on patient experience. The intrapersonal level refers to individual characteristics of patients. The interpersonal level refers to interactions between patients and healthcare providers, such as the caring time spent by a nurse. The institutional level refers to organizational characteristics, rules and regulations for operations, such as hospital size and accreditation. The community level refers to relationships among organizations, institutions, and informational networks within defined boundaries, such as a hospital located in a larger population area. Public policy level refers to local, state, national, and global laws and policies, including health insurance policies. The sixth domain, survey-related factors, was added to the framework and included factors such as survey response rate and survey response time. CONCLUSION: The factors influencing patient experience are comprehensive, ranging from intrapersonal to public policy. Providers should adopt a holistic and integrated perspective to assess patient experience and develop context-specific interventions to improve the quality of care. PROSPERO REGISTRATION NUMBER CRD42023401066.

12.
Med Clin (Barc) ; 2024 Aug 01.
Artículo en Inglés, Español | MEDLINE | ID: mdl-39095265

RESUMEN

BACKGROUND: Patient-reported outcome measures (PROMs) and patient-reported experiences measures (PREMs) are crucial for understanding the impact of GD on quality of life and patient's perceptions on care, but also to guide decision-making processes. Nevertheless, no specific PREMs in GD have been published, neither PROMs for Spanish GD patients have been developed. METHODS: Two project coordinators selected key-points to be included in a PROMs/PREMs questionnaire, and the scientific committee and a group of expert patients contributed to the initial draft. Then, 9 meetings with experts were held to discuss controversial points. After, a questionnaire with 103 items regarding symptomatology, aspects of daily life and care experience was developed. Finally, it was conducted a Delphi survey among a multidisciplinary group of experts in GD. RESULTS: Consensus was reached on 85 out of the 103 items. Recommendations on PROMs and PREMs regarding symptomatology, aspects of daily life and care experience were obtained. Consensus was reached on the importance of considering fatigue, concentration problems, and communication issues in GD patients using 5-step analog scales. Panelists recommended asking GD patients about the impact on social functioning and work/school performance. Finally, consensus was reached on considering care experiences, such as treatment satisfaction, treatment interruptions or transitions and healthcare professionals involved in patient's management to perceive patient's perceptions. CONCLUSION: This expert consensus may help developing GD-specific PROMs/PREMs for improving GD management. Properly developed and validated PROMs/PREMs may help decision-making, establishing patient-tailored therapeutic and follow-up goals.

13.
Artículo en Inglés | MEDLINE | ID: mdl-39095337

RESUMEN

PURPOSE: Near real-time patient experience feedback (NRTPEF) can enable a patient-centric, immediate service recovery but has not been widely used in inpatient rehabilitation. We 1) assess the utility, feasibility, and acceptability of implementing a new NRTPEF, perceived by patients and providers; and 2) understand how the NRTPEF became embedded into routine provider practices. MATERIALS AND METHODS: Mixed methods process evaluation of the 8-month implementation of an innovative NRTPEF in an inpatient rehabilitation unit, using interviews and focus groups with all the service-unit leaders and interviews with a randomised sample of patients. Beyond descriptive statistics and content analysis, the Normalisation Process Theory (NPT) informed a framework analysis. RESULTS: Patients and service-unit leaders perceived high utility in the NRTPEF (median: 9 for both; 0-10 scale) and qualitative comments emphasised the value of providing/obtaining timely feedback. The system was found feasible and acceptable for patients (median: 9.5), but with an improvement margin for providers (median: 7.3). Suggestions include strengthening the data-relay format. Even in the pilot form, providers found the NRTPEF became embedded into practice (median 10; average: 8.6). The analysis based on the NPT shows how providers saw differential value, engaged with, and used the patient feedback into reconfigured practices. CONCLUSION: An innovative NRTPEF was found useful, feasible and acceptable, but with refinement opportunities before scale-up.

14.
Psychol Psychother ; 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39096003

RESUMEN

In recent times there has been increasing acknowledgement of the importance of attending to the agenda of people with lived experience in psychotherapy research. In particular, young people's voices have been recognised as central to the design and development of psychotherapies that work for them. It is important to recognise the limits of professional agendas and make sure that young people's own priorities are represented in the indicators against which we measure change in research evaluations of psychotherapy. This requires an extension of evaluation research indicators from psychiatric symptomatology, to include aspects of wellbeing that matter to young people themselves. This article joins others in calling for a shift from the focus on symptom change in the evaluation of psychotherapy with youth, to acknowledge subjective indicators identified through research conducted with young people. New indicators might, for example, be centred on the degree to which young people experience increased capacity for acceptance of their emotions, a comfortable sense of identity, improved relational trust, and a stronger sense of their own agency. If psychotherapy is to be meaningful to young people, it is vital that we tailor it to young people's own needs and priorities and evaluate it against the aspects of change that matter to them.

15.
Scand J Public Health ; : 14034948241255181, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39086303

RESUMEN

AIMS: The aim of this study was to assess the cultural validity and reliability of a Finnish version of the nine-item Shared Decision-Making Questionnaire (SDM-Q-9) in a sample of patients with different sociodemographic characteristics. METHOD: The original SDM-Q-9 was translated into Finnish with the agreement of the developers of the original scale. The standardised translation procedure was followed by a pilot test of the questionnaire. The data were collected from an online questionnaire. Reliability was estimated by Cronbach's alpha. Structural validity of the questionnaire was assessed by confirmatory factor analysis. RESULTS: The pilot study assessing the cultural validity of the scale was a success, as it did not find any expressions needing to be revised. The Finnish version of the SDM-Q-9 - the SDM-Q-9-FIN - was tested in the study where a total of 736 patients responded to the questionnaire. The questionnaire yielded high reliability with a Cronbach's alpha of 0.92. Confirmatory factor analysis confirmed the unidimensional factor structure with Item 1 excluded. CONCLUSIONS: The SDM-Q-9-FIN was shown to be a reliable instrument for evaluating shared decision-making among Finnish patients. Further testing and research are recommended among a greater diversity of patient groups.

16.
Ethn Health ; : 1-24, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39087316

RESUMEN

OBJECTIVES: Forced migration and its subsequent sequelae have caused refugees to face significant adversities throughout the displacement process, making them susceptible to significant health issues. Refugees displaced in Africa are a group especially vulnerable to poor health outcomes, experiencing a documented decline in overall physical and mental health status and rise in mortality from non-communicable diseases (NCDs). Despite the heightened health risks experienced by Somali refugees, particularly women, research into their complex illness experiences and co-/multimorbid health conditions is scarce, leaving a gap in our understanding of the multifaceted health challenges of this population. DESIGN: Using structural vulnerability theory, this study explores how the broader host context shapes illness experiences for Somali refugee women in Kenya. Specifically, we describe the factors associated with illness experiences of urban Somali refugee women and how this compares with women with other similarly situated identities, such as Somali Kenyan women, other/non-Somali refugees, and Kenyan women. In-depth interviews were conducted with 43 women in Eastleigh, Kenya. RESULTS: Using hybrid thematic analysis, the emergent themes were grouped into three distinct domains: (1) multimorbid, complex illness experiences, (2) embodiment of structural vulnerability, and (3) distinct/shared vulnerability among refugee/non-refugee women. Results suggest that illness experiences of displaced refugee women are inextricably linked to traumatic experiences before displacement, as well as the experiences of transmigration stressors and the hostile socio-legal dynamics encountered post-displacement. CONCLUSIONS: Our findings also have implications for the need to consider intersectional identities when examining for differential exposure to structural risks and the susceptibility to poor health experiences as well as supports the need for urgent change and improvement in systems of social protection and basic care for refugees experiencing prolonged displacement.

17.
Subst Use Addctn J ; : 29767342241263675, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39087448

RESUMEN

BACKGROUND: Addressing the negative impact of substance use disorders (SUDs) on individuals, families, and communities is a public health priority. Most treatments and interventions require engagement with a healthcare provider or someone who can offer recovery support. The need for interventions that facilitate self-management of relapse triggers at the moment they occur is also critical. Our study aimed to explore the user experience of individuals using a just-in-time smartphone episodic resonance breathing (eRPB) intervention to address stress, anxiety, and drug cravings. METHODS: We conducted an 8-week pilot study of the eRPB with 30 individuals in recovery from SUD. Data on 3 indicators of user experience-acceptability, appropriateness, and feasibility-were collected using survey questions (n = 30) and semi-structured interviews (n = 11). We performed univariate analysis on the survey data and deductive thematic analysis on the qualitative data. RESULTS: A majority of the survey respondents agreed that the application (app) was acceptable (> 77%), appropriate (> 82%), and feasible (> 89%). Several interview participants stated that the app helped them relax and manage stress and cravings and expressed appreciation for the simplicity of its design. Participants also reported barriers to feasibility (such as forgetting to use the app) and recommendations for improvement (such as the addition of motivational messages). CONCLUSIONS: Our findings show that individuals in recovery from SUD had highly positive experiences with the eRPB app. A positive user experience may improve adherence to the intervention and, ultimately, the self-management of stress, anxiety, and craving relapse triggers.

18.
J Genet Couns ; 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39087554

RESUMEN

BACKGROUND: Parents and survivors of retinoblastoma often hold misconceptions about the disease and desire more extensive and detailed information about its genetic nature. The aim of this study was to co-develop and evaluate a genetic education booklet for retinoblastoma. METHODS: A human-centered design approach was employed, in which the study team consulted with clinician and patient knowledge user groups to design, produce, and refine an educational booklet. Over three phases of consultation, the study team met with each knowledge user group to review booklet prototypes and collect feedback for its further refinement. A preliminary evaluation using quantitative and qualitative methods was completed with six mothers of children with retinoblastoma. RESULTS: The iterative, phased design process produced an educational booklet rich in images and stories, with complex genetic topics described in simplified terms. The preliminary evaluation showed an average improvement in knowledge between pre- and post-test questionnaire of 10%. Participants were satisfied with content and comprehensiveness of the information included in the booklet. CONCLUSION: A novel educational tool for families affected by retinoblastoma was developed through collaboration with health care and patient knowledge users. Preliminary evaluation results indicate it is feasible to implement and study the booklet in a prospective, pragmatic trial to evaluate its efficacy.

19.
Theory Biosci ; 2024 Aug 03.
Artículo en Inglés | MEDLINE | ID: mdl-39096453

RESUMEN

The phenomenon of near death and dying experiences has been both of popular interest and of scientific speculation. However, the reality of mental perception at the point of death is currently a subjective experience and has not been formally evaluated. While postmortem gene expression, even in humans, has been evaluated, restoration of postmortem brain activity has heretofore only been attempted in animal models, at the molecular and cellular levels. Meanwhile, progress has been made to translate brain activity of living humans into speech and images. This paper proposes two inter-related thought experiments. First, assuming progress and refinement of the technology of translating human brain activity into interpretable speech and images, can an objective analysis of death experiences be obtained by utilizing these technologies on dying humans? Second, can human brain function be revived postmortem and, if so, can the relevant technologies be utilized for communication with (recently) deceased individuals? In this paper, these questions are considered and possible implications explored.

20.
Explore (NY) ; 20(6): 103036, 2024 Jul 24.
Artículo en Inglés | MEDLINE | ID: mdl-39096700

RESUMEN

Increasing numbers of research studies have offered evidence regarding awareness of verified events during near-death experiences (NDEs) occurring during cardiac arrest and severely impaired brain function. The prevalence of patients reporting core NDEs under these conditions is reported as 10-12 %. One question that is often asked is why this percentage is low. Though it may be hypothesized that NDEs are limited to this low percentage of patients, it is also possible that more patients experience an NDE, but that memory is impaired sufficiently such that the NDE is not recalled. In this article I present a detailed and extensively verified case study of a woman, Stephanie Arnold, who experienced an NDE during the birth of her second child when she was 41 years old. The data provide evidence that supports the hypotheses 1) that during cardiac arrest an NDE may occur, but not be remembered until hypnotic regression therapy reveals extensive details of the events that could not have been perceived with the five senses, both in the operating room and elsewhere during resuscitation. 2) that there may also be pre-cognition of the events leading to the cardiac arrest, reported in clear detail, and 3) that NDEs lead to a fundamental transformation in an individual's understanding of the nature of consciousness, their quest for meaning and purpose, their concern for others, and their appreciation of life.

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