Consideraciones bioéticas en el manejo de la esclerosis lateral amiotrófica: Una aproximación al quehacer fonoaudiológico

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.

Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

Ethical implications of developing RNA-based therapies for cardiovascular disorders.

The awareness concerning RNA-based therapies was boosted significantly after the successful development of COVID-19 vaccines. However, they can potentially lead to significant advances in other areas of medicine, such as oncology or chronic diseases. In recent years, there has been an exponential increase in the number of RNA-based therapies that were evaluated as potential treatments for cardiovascular disorders. One of the areas that was not explicitly assessed about these therapies is represented by their overall ethical framework. Some studies evaluate ethical issues of RNA-based treatments in general or targeting specific disorders (especially neurodegenerative) or interventions for developing RNA-based vaccines. Much less information is available regarding the ethical issues associated with developing these therapeutic strategies for cardiovascular disorders, which is the main aim of this study. We will focus our analysis on three main topics: risk-benefit analysis (including the management of public awareness about these technologies), and justice (in both research and clinical medicine).

A preliminary validation of the impact on participation and autonomy questionnaire in an Iranian sample of patients with type 2 diabetes.

BACKGROUND: This study aimed to determine the face, convergent validity, internal consistency, and stability reliability of the impact on participation and autonomy-Persian version (IPA-p) scale for using among Iranian patients with type 2 diabetes. MATERIALS AND METHODS: Trained experts interviewed 227 type 2 diabetes patients who were registered in out-patient Diabetes Clinic of Ali-Ibn Abi-Talib Hospital, (Rafsanjan, Southeast Iran from May 2018 to February 2019) and their relatives to assess the face and convergent validity, internal consistency, and stability reliability of the IPA-p scale. A checklist was used to collect demographic information and also to record expert's̛̛̛̛̛̛ points of view about the scale to assess face validity. Internal consistency was measured using Cronbach's alpha, and stability was assessed using interclass correlation coefficients (ICCs). Test-retest method was used to detect the reliability of the questionnaire. Respondents completed the IPA-p scale on the two occasions with an interval of 30-45 days. RESULTS: In relation to convergent validity, the confirmatory model showed an acceptable fit and the scale had a highly convergent validity. Exploratory factor analysis showed that the IPA-p scale has a ten-factor structure that explained 77.42% of the variance. Cronbach's alpha between the mean IPA-p scores achieved on the two occasions ranged from 0.65 to 0.92. Test-retest ICCs for the ten domains were between 0.64 and 0.81. CONCLUSIONS: The IPA-p questionnaire can be a relatively valid and reliable instrument for assessing self-reported participation among Iranian type 2 diabetes patients. However, some improvement is needed to make it fully suitable for using among Persian-language diabetic patients.

Open notes in psychotherapy: An exploratory mixed methods survey of psychotherapy students in Switzerland.

Background: In a growing number of countries, patients are offered access to their full online clinical records, including the narrative reports written by clinicians (the latter, referred to as "open notes"). Even in countries with mature patient online record access, access to psychotherapy notes is not mandatory. To date, no research has explored the views of psychotherapy trainees about open notes. Objective: This study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients' access to psychotherapists' free-text summaries. Methods: We administered a web-based mixed methods survey to 201 psychotherapy trainees to explore their familiarity with and opinions about the impact on patients and psychotherapy practice of offering patients online access to their psychotherapy notes. Descriptive statistics were used to analyze the 42-item survey, and qualitative descriptive analysis was employed to examine written responses to four open-ended questions. Results: Seventy-two (35.8%) trainees completed the survey. Quantitative results revealed mixed views about open notes. 75% agreed that, in general open notes were a good idea, and 94.1% agreed that education about open notes should be part of psychotherapy training. When considering impact on patients and psychotherapy, four themes emerged: (a) negative impact on therapy; (b) positive impact on therapy; (c) impact on patients; and (d) documentation. Students identified concerns related to increase in workload, harm to the psychotherapeutic relationship, and compromised quality of records. They also identified many potential benefits including better patient communication and informed consent processes. In describing impact on different therapy types, students believed that open notes might have differential impact depending on the psychotherapy approaches. Conclusions: Sharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the views of psychotherapy trainees regarding the impact of open notes on patient care and psychotherapy practice.

Enhancing emotional health and engagement in Chinese English language learners: an approach from teachers' autonomy- supportive behavior, teachers' harmony, and peer support in a two-sample study.

Background: In the evolving landscape of Chinese education, understanding the factors that influence the emotional health and engagement of English language learners is increasingly vital. Against this backdrop, our study delves into how teachers' autonomy-supportive behavior, teachers' harmony, and peer support impact these key educational outcomes. Aim: This study investigates the roles of teachers' autonomy-supportive behavior, teachers' harmony, and peer support in influencing the emotional health and engagement of English language learners in China. Method: Involving a diverse sample of 68 English Language Teachers and their 389 students from various Chinese universities, the study leverages a convenience sampling method. Results: Key findings indicate that students' emotional health is predominantly influenced by peer support, while student engagement is significantly affected by a combination of teachers' autonomy-supportive behavior, peer support, and teachers' harmony. These outcomes highlight the importance of both teacher behavior and peer relationships in educational settings, underscoring their crucial roles in enhancing student well-being and engagement. The study's methodology, incorporating a diverse sample from multiple educational institutions and a comprehensive analytical approach, offers robust insights. However, the limitations of convenience sampling and reliance on self-reported data necessitate a careful interpretation of the findings. Implications: Implications from this research are vital for educational policy and practice, emphasizing the need for interventions that enhance teacher-student relationships and foster supportive peer environments. This study adds to the body of knowledge on factors influencing emotional health and engagement among English language learners, advocating for a comprehensive approach in educational strategies and interventions.

Recent Developments in the Regulation of Heritable Human Genome Editing.

In 2018, the Chinese scientist He Jiankui presented his research at the Second International Summit on Human Genome Editing in Hong Kong. While it was intended that he facilitate a workshop, he was instead called on to present his research in heritable human genome editing, where he made the announcement that he had taken great strides in advancement of his research, to the extent that he had gene-edited human embryos and that this had resulted in the live births of two children. While his research ethic and methodology was interrogated, he insisted that two children, twin girls, had been born healthy and that there was another pregnancy (at the time) where birth of a third gene edited child would be imminent. This announcement generated a ripple effect in the scientific community and exposed the gaps in regulation and absence of law relating to the technology. This resulted in a flurry of activity and conversation around regulation of the technology, which scientists stated was not ready for human trials. This article reviews the Third Summit which was held in London in March 2023 and comments on the latest developments in the regulation of heritable human genome editing.

Overnight In-House Critical Care Resource Intensivist Improves General Surgery Resident Education.

24/7 critical care staffing has become more commonplace, and their impact on resident training must be carefully considered. At our institution, the Critical Care Resource Intensivist (CCRI) model was implemented to provide in-house dedicated faculty responsible solely for the provision of critical care overnight. An anonymous survey was distributed to all general surgery residents to evaluate CCRI's impact on education and autonomy. Descriptive statistics were completed for quantitative data. Qualitative analysis of free text responses was completed to identify consensus themes. Responses from 26 residents demonstrated they associated CCRI with improved resident education, supervision, and patient care, without limiting autonomy. Qualitative analysis yielded 7 themes, reflecting improvements in patient care and safety, progression of care, operations and procedures, improved education, availability, and independence, but noted potential for conflict. Our findings show 24/7 dedicated intensivist staffing can enhance general surgery resident education without limiting autonomy.

Moral obligation, autonomous motivation and vaccine hesitancy: Highlighting moral obligation increases reactance in hesitant individuals.

Vaccine hesitancy is widespread, and developing effective communication strategies that encourage hesitant individuals to choose vaccination is essential. This pre-registered research aimed to examine associations among moral obligation, autonomous motivation, vaccination intentions and reactance, and to test messages highlighting moral obligation and autonomy support. In Study 1, participants who had not received a Covid-19 vaccine (N = 1036) completed measures of autonomous motivation, moral obligation, reactance, intentions to vaccinate and vaccine hesitancy. Autonomous motivation and moral obligation emerged as strong independent predictors of lower reactance, lower hesitancy and greater vaccination intentions. In Study 2 (N = 429), the participants received a vaccination-promoting message that highlighted moral obligation versus personal protection and used autonomy supportive versus controlling language. Messages with autonomy-supportive language and highlighting personal protection elicited lower reactance and greater perceived legitimacy compared to messages with controlling language and highlighting moral obligation. All messages elicited greater reactance and lower perceived legitimacy compared to an information-only message, and there were no effects of message type on vaccination intentions or vaccine hesitancy. The research has implications for the design of communications encouraging vaccination in hesitant individuals and suggests caution should be taken when developing messages to encourage vaccination in hesitant individuals.

Novel motivational interviewing-based intervention improves engagement in physical activity and readiness to change among adolescents with chronic pain.

INTRODUCTION: Engaging adolescents with chronic pain in physical activities is challenging. Motivational interviewing (MI) combined with activity promotion may encourage teens to make behavioural changes. This research aimed to assess the feasibility and acceptability of our MI-based physical activity promotion programme, the M3 training. METHODS: In our exploratory study with 35 adolescent-parent dyads, we evaluated the feasibility by enrolment, drop-out and retention rates. Acceptability of the M3 training was examined by adherence rates and participation experiences through open-ended questions. We also assessed changes in pain self-efficacy and readiness to change after the M3 training intervention. RESULTS: The M3 training was feasible with an adequate enrolment (77.8%) and retention (85.7%) rate. Both teens and parents found the M3 training acceptable and considered exercise and physical activity the most helpful elements of the programme (36% and 37%, respectively). While self-efficacy remained unchanged, we identified a significant increase in the readiness to change for adolescents and parents. CONCLUSION: M3 training improved physical activity engagement while prioritising adolescents' autonomy. Furthermore, it appears to be a clinically relevant approach and could result in a positive shift in readiness to change within a shorter timeframe. PATIENT OR PUBLIC CONTRIBUTION: The preliminary version of the M3 training was reviewed and commented upon by the public (adolescents and adults). Adolescents who participated in this study were designing their own movement programme, considering their lived experiences. Participants' feedback was used to create the online version of the M3 training (which will be published elsewhere).

[From comprehensive geriatric assessment to an integrated multidimensional assessment system : interRAI tools and their applications]. / De l'évaluation gériatrique standardisée à un système intégré d'évaluation multidimensionnelle : les outils interRAI et leurs applications.

The multidimensional assessment carried out with interRAI tools constitutes an operationalization of the International Classification of Functioning, Disability and Health (ICF) and is adapted to the specificities of each place of care. From a single assessment, the interRAI approach makes it possible to conduct a multidimensional assessment of functional autonomy and to produce a series of indicators (health, areas of intervention, quality of care and consumption of resources). It helps to identify clinical needs to be the subject of a personalized care plan and the strengths and weaknesses of health organizations to modify the professional practices. Compared to standardized geriatric assessment, interRAI tools consider the person's expectations and resources, offer a universal common language, produce a multidimensional synthesis and facilitate the construction of an integrated information system. The basis for their development is scientificity based on evidence.

Eating experiences in people living with dementia: A concept analysis using Rodgers's methodology.

AIMS: To analyse the concept of eating experiences in people living with dementia. DESIGN: Rodgers' evolutionary method of concept analysis was used as a framework for the paper. DATA SOURCES: The literature was searched using electronic databases PubMed, Google Scholar, CINHAL, PsycInfo, Web of Science, Embase and Elsevier databases. These databases cover a variety of disciplines, including but not limited to nursing, medicine and occupational therapy. The relevant literature published from 1989 to April 2023 was thoroughly examined. Any quantitative or qualitative studies published in English focused on eating or dining experiences in people with dementia were included. REVIEW METHODS: Rodgers' evolutionary method for concept analysis was used. The attributes, antecedents, consequences and case examples of the concept were identified. RESULTS: Twenty-two articles met the inclusion criteria, identifying key attributes of self-connection, the special journey of life and self-interpretation. Antecedents, as framed by the socio-ecological model, were categorized to represent intrapersonal (personal preferences, individual culture, mealtime routines), interpersonal (social interaction) and environmental (dining room environment, policies) factors. Consequences were divided into external (nutritional health, physical health and quality of life) and internal (personhood, autonomy and independence, dignity and feeling valued and mental well-being) domains. CONCLUSION: A theoretical definition and conceptual model of eating experiences in people living with dementia was developed. The identified attributes, antecedents and consequences can be utilized in nursing education, research and intervention approaches. IMPACT: This article allows nurses and other healthcare professionals to better understand people living with dementia through the relationship between eating and interpersonal, intrapersonal and environmental aspects to develop personalized interventions and care strategies to achieve an optimal quality of life. PATIENT OR PUBLIC CONTRIBUTION: Not applicable.

Managing the move from assisted to independent living: an inclusive qualitative study among adults with cerebral palsy.

PURPOSE: To understand aspects important to adults with severe cerebral palsy (CP) as they prepare to move from assisted to independent living and to create an appropriate intervention. MATERIALS AND METHODS: An inclusive qualitative study was conducted together with adults with severe CP (Gross Motor Function Classification Scale 4-5) preparing to move to independent living. It included semi-structured interviews which were recorded, transcribed, and analyzed by two occupational therapists to create themes. The themes were reviewed and adjusted by the partners in a group context. RESULTS: Seven partners aged 23-47 years (median= 35 years, standard deviation = 10; 4 female) participated. Four themes arose with sub-themes: (1) house management (finances, meals, maintenance, and housework), (2) interactions and boundaries (with a caregiver, family, friends, and romantic partners), (3) schedules (work, leisure, volunteering, education, and health management), and (4) "my way" (autonomy, independence, and self-advocacy; emotions and group power). These themes expressed the concerns of the partners and formed the basis of a group intervention before their move from assisted to independent living. CONCLUSIONS: The inclusive research revealed themes the partners raised that expressed their concerns; these became the basis for a group intervention to prepare for their move from assisted to independent living.

People with severe cerebral palsy raise many concerns regarding living independently.The theme most often discussed illuminated the desire for control over the process.Inclusive research allows participants to co-create a tailor-built intervention.

Do Suicide Attempters Have a Right Not to Be Stabilized in an Emergency?

The standard of care in the United States favors stabilizing any adult who arrives in an emergency department after a failed suicide attempt, even if he appears decisionally capacitated and refuses life-sustaining treatment. I challenge this ubiquitous practice. Emergency clinicians generally have a moral obligation to err on the side of stabilizing even suicide attempters who refuse such interventions. This obligation reflects the fact that it is typically infeasible to determine these patients' level of decisional capacitation-among other relevant information-in this unique setting. Nevertheless, I argue, stabilizing suicide attempters over their objection sometimes violates a basic yet insufficiently appreciated right of theirs-the right against bodily invasion. In such cases, it is at least prima facie wrong to stabilize a patient who wants to die even if they lack a contrary advance directive or medical order and suffer from no terminal physical illness.

Access to healthcare for migrants in Tunisia in 2023-2024: Current situation and ethical challenges.

INTRODUCTION: Transformed progressively into a transit country towards Europe but also as a host, Tunisia has seen a diversification of migratory movements since the 2011 revolution, as well as the profiles of migrants who face multiple difficulties that can have an impact on their health. AIM: This update aimed to expose the situation of migrants in Tunisia regarding access to healthcare, and to raise the ethical issues that result from it. RESULTS: Providing care to vulnerable individuals, especially migrants, compels us to reevaluate our practices and question ourselves. Ethical questioning is constant to determine how to do well and not harm. The reflection on this more humane "social medicine" comprehending the patient in its entirety, is only in its beginnings. The critical health status of the poorest populations and their extreme vulnerability do not only call for adapted and specific care measures but also a more comprehensive questioning of social ties and the place that our society grants to the weakest and excluded. CONCLUSION: Migration must be considered as a central issue of the ethics of the health of a population in order to provide quality care without prejudice.

Might the bioethical principle of individual decisional autonomy have a politically liberalizing effect on soft authoritarian communities?

According to the bioethical principle of individual decisional autonomy, the patient has a right of informed consent to any medical or experimental procedure. The principle is politically liberal by advocating significant individual freedom as guaranteed by law and secured by civil liberties. When practiced in illiberal communities, might it have a political liberalizing effect? I respond first by analyzing cross-national norms of individual decisional autonomy to identify tensions with illiberal community; second, by examining examining Singapore in a single case study to show that liberal bioethics does not promote political liberalization; and third, by showing that the possibility of practicing liberal bioethics in research, clinically as well as in education, does not require a democratic order, and that liberal bioethics is unlikely to encourage the liberalization of illiberal political communities. Hence, it may never contribute to the development of globally effective cross-national norms for the legal regulation of bioethical research and clinical practice. Fourth, to bolster this analysis, I anticipate several possible objections to various of its aspects.

Examining Women's HIV Protective Behaviors in Nepal.

Women's autonomy in decision making has important sexual and reproductive health implications. This study uses a nationwide analysis in Nepal to examine women's autonomy, attitude toward intimate partner violence (IPV) behaviors, and HIV-related knowledge in the execution of HIV protective behaviors such as having one sexual partner or getting an HIV test to prevent HIV transmission. Secondary data analysis was conducted using the nationally represented Nepal Demographic and Health Survey (2016-2021) dataset. The sample included 9,904 women ages 15 to 49 who self-identified as ever married. Factor analysis for women's autonomy, attitude toward IPV behaviors, and HIV-related knowledge were conducted based on social dominance theory. Structural equation modeling was conducted, and the results indicated that higher autonomy decreased the risk of HIV infection through having one sexual partner. Factors related to multiple sex partners included unemployment, religious affiliation, and age. Similarly, higher autonomy, HIV-related knowledge, having a formal job, and urban residence increased women's likelihood of taking an HIV test. Women's higher education, greater wealth, religious affiliation, and youth also correlate with HIV testing. Future HIV prevention interventions should include strategies that support women's social and economic empowerment and enhance women's ability to make informed choices about their health and risks.

Attitudes of the Portuguese population towards advance directives: an online survey.

BACKGROUND: Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs. METHODS: An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023. RESULTS: A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence. CONCLUSION: The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.

Definition and perception of autonomy in vascular surgery training.

INTRODUCTION: There is a lack of data evaluating operative autonomy within vascular surgery. This study aims to determine where discrepancies exist in the definition of autonomy between trainees and attending faculty. METHODS: An IRB approved, anonymous survey was emailed to vascular trainees and attending faculty at all ACGME-approved vascular surgery training programs in the United States. Data was compared using chi-square statistical analysis. RESULTS: One-hundred forty-nine responses from vascular surgery trainees (n=89) and faculty (n=60) were obtained. The most highly ranked pre-operative skill by trainees was Case Planning, at all PGY-levels. Although a majority of trainees believe this skill is expected of them, only 36.1% of attendings responded that they expect all trainee levels to perform this task. Draping/positioning was ranked as the 2nd most important intra-operative task for all PGY-levels by attendings, however only 32.8% of attendings expect trainees to perform this. Exposure of Critical Structures was ranked as the most important intra-operative task by both trainees and attendings at the Chief and Fellow level. However, responses by both trainees and attendings showed that this is expected <70% of the time. When asked about double-scrubbing independently of other tasks, most trainees assessed double-scrubbing as inherently important to autonomy at all levels of training and within all regions. Only 44.3% of attendings responded that they expect all trainees to double scrub. Additionally, most trainees in all regions responded that they spend <25% of cases double-scrubbed. CONCLUSION: These responses show a discrepancy between the skills that both trainees and attendings deem important to autonomy versus what is being expected of trainees in reality.

"It is very hard to just accept this" - a qualitative study of palliative care teams' ethical reasoning when patients do not want information.

BACKGROUND: The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed. METHODS: The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data. RESULTS: The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way. CONCLUSIONS: In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient's wishes, or to provide information with the patient's best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.