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.

Factors associated with the health and reproductive autonomy of Quilombola women in Brazil / Factores asociados a la salud y la autonomía reproductiva de las mujeres quilombolas en Brasil / Fatores associados à saúde e autonomia reprodutiva de mulheres quilombolas no Brasil

Objective.To verify the association between reproductive autonomy and sociodemographic, sexual, and reproductive characteristics in Quilombola women (a term indicating the origin of politically organized concentrations of Afro-descendants who emancipated themselves from slavery).Methods. Cross-sectional and analytical study with 160 women from Quilombola communities in the southwest of Bahia, Brazil. Data were collected using the Reproductive Autonomy Scale and the questionnaire from the National Health Survey (adapted).Results. Out of the 160 participating women, 91.9% declared themselves as black, one out of every three were aged ≤ 23 years, 53.8% were married or had a partner, 38.8% had studied for ≤ 4 years, over half (58.1%) were unemployed, only 32.4% had a monthly income > R$ 430 (80 US dollars), 52.5% had their first menstruation at the age of 12, 70.7% had not accessed family planning services in the last 12 months, and over half used some method to avoid pregnancy (59.0%). The women had a high level of reproductive autonomy, especially in the "Decision-making" and "Freedom from coercion" subscales with a score of 2.53 and 3.40, respectively. A significant association (p<0.05) was found between the "Total reproductive autonomy" score and marital status, indicating that single or unpartnered women had higher autonomy compared to married or partnered women. Conclusion.The association of social determinants of health such as marital status, education, and age impacts women's reproductive choices, implying risks for sexual and reproductive health. The intergenerational reproductive autonomy of Quilombola women is associated with sociodemographic and reproductive factors.

Objetivo. Verificar la asociación entre autonomía reproductiva y características sociodemográficas, sexuales y reproductivas en mujeres quilombolas (término que indica procedencia de concentraciones de afrodescendientes políticamente organizadas que se emanciparon de la esclavitud). Métodos. Estudio transversal y analítico con 160 mujeres de comunidades quilombolas del sudoeste de Bahía, Brasil. Los datos fueron recolectados utilizando la Escala de Autonomía Reproductiva y el cuestionario de la Encuesta Nacional de Salud (adaptado). Resultados. De las 160 mujeres participantes 91.9% se declararon negras, una de cada tres tenía edad ≤ 23 años, 53.8% estaban casada o tenían pareja, 38.8% había estudiado por ≤ 4 años, más de la mitad (58.1%) no trabajaba, solo 32.4% tenía renta > R$ 430 mensual (87 $US dólares), el 52.5% tuvo la primera menstruación a los 12 años, 70.7% no había acudido a servicios de planificación familiar en los últimos 12 meses y más de la mitad usaba algún método para evitar embarazo (59%). Las mujeres tuvieron un alto nivel de autonomía reproductiva, especialmente en las subescalas "Toma de decisiones" y "Ausencia de coerción" con una puntuación de 2.53 y 3.40, respectivamente. Se encontró asociación significativa (p<0.05) entre la puntuación de "Autonomía reproductiva total" con el estado civil, indicando el análisis que las mujeres solteras o sin pareja tenían mayor autonomía en comparación con las casadas o con pareja. Conclusión. La asociación de determinantes sociales de la salud como el estado civil, la escolaridad y la edad interfieren en las opciones reproductivas de las mujeres, implicando riesgos para la salud sexual y reproductiva. La autonomía reproductiva intergeneracional de las mujeres quilombolas está asociada a factores sociodemográficos y reproductivos.

Objetivo. Verificar a associação entre a autonomia reprodutiva e características sociodemográficas, sexuais e reprodutivas em mulheres quilombolas (termo que indica a origem de concentrações politicamente organizadas de pessoas de ascendência africana que se emanciparam da escravatura). Métodos. Estudo transversal e analítico com 160 mulheres (80 mães e 80 filhas) de comunidades quilombolas no sudoeste baiano, no Brasil. Os dados foram construídos através da aplicação da Escala de Autonomia Reprodutiva e do questionário da Pesquisa Nacional de Saúde (adaptado). Resultados. das 160 mulheres participantes 91.9% se autodeclararam negra, a maioria com idade ≤ 23 anos (35.6%), 53.8% são casadas ou com companheiro, 38.8% com estudos ≤ 4 anos, mais da metade (58.1%) não trabalham, apenas 32.4% têm renda > R$ 430, a maioria teve a primeira menstruação até os 12 anos de idade (52.5%), não participou de grupo de planejamento familiar nos últimos 12 meses (70.7%), mais da metade utilizava método para evitar a gravidez (59%). Apresentaram elevada autonomia reprodutiva, com destaque para as subescalas "Tomada de decisão" e "Ausência de coerção" medindo 2.53 e 3.40, respectivamente. Encontrou-se associação significativa (p<0.05) entre o escore de "Autonomia reprodutiva total" e estado conjugal, com a análise indicando que mulheres solteiras ou sem companheiro apresentaram maior autonomia, comparadas às mulheres casadas ou com companheiro. Conclusão. A associação dos determinantes sociais de saúde como estado civil, menarca, escolaridade e idade interferem nas escolhas reprodutivas das mulheres, implicando em riscos à saúde sexual e reprodutiva. A autonomia reprodutiva intergeracional das mulheres quilombolas está associada a fatores sociodemográficos e reprodutivos.

Challenges Addressing Lung Cancer Screening for Patients With Multimorbidity in Primary Care: A Qualitative Study.

PURPOSE: Many individuals who are eligible for lung cancer screening have comorbid conditions complicating their shared decision-making conversations with physicians. The goal of our study was to better understand how primary care physicians (PCPs) factor comorbidities into their evaluation of the risks and benefits of lung cancer screening and into their shared decision-making conversations with patients. METHODS: We conducted semistructured interviews by videoconference with 15 PCPs to assess the extent of shared decision-making practices and explore their understanding of the intersection of comorbidities and lung cancer screening, and how that understanding informed their clinical approach to this population. RESULTS: We identified 3 themes. The first theme was whether to discuss or not to discuss lung cancer screening. PCPs described taking additional steps for individuals with complex comorbidities to decide whether to initiate this discussion and used subjective clinical judgment to decide whether the conversation would be productive and beneficial. PCPs made mental assessments that factored in the patient's health, life expectancy, quality of life, and access to support systems. The second theme was that shared decision making is not a simple discussion. When PCPs did initiate discussions about lung cancer screening, although some believed they could provide objective information, others struggled with personal biases. The third theme was that ultimately, the decision to be screened was up to the patient. Patients had the final say, even if their decision was discordant with the PCP's advice. CONCLUSIONS: Shared decision-making conversations about lung cancer screening differed substantially from the standard for patients with complex comorbidities. Future research should include efforts to characterize the risks and benefits of LCS in patients with comorbidities to inform guidelines and clinical application.

Development and effectiveness of a mobile-based autonomy support program for the prevention of metabolic syndrome in middle-aged women.

Objective: Utilizing self-directed strategies for maintaining and managing healthy lifestyle habits is efficient, and it is essential to consider individual motivation, as it is a factor that directly influences the adoption and maintenance of healthy behaviors. The study aimed to assess the effects of a mobile-based autonomy support program on basic psychological needs, autonomous motivation, health behavior, and metabolic syndrome indicators in middle-aged women. Methods: This study was a non-randomized controlled trial with a pre-test and post-test design, focused on validating a mobile-based autonomy-supportive program to prevent metabolic syndrome in middle-aged women. The experimental group participated in a 12-week mobile-based autonomy support program, which included components such as education, physical activity guidance, dietary management, and real-time data monitoring. In contrast, the control group was provided with comparable educational resources. Assessments of basic psychological needs, autonomous motivation, health behavior, and metabolic syndrome indicators were conducted at baseline and again at the 12-week mark. Results: After a 12-week period, the experimental group demonstrated significant enhancements in autonomy (p = 0.004) and competence (p < 0.001), two key dimensions of basic psychological needs. Autonomous motivation (p < 0.001) and health behavior scores (p < 0.001) were also significantly higher in the experimental group, while waist circumference (p = 0.048) and systolic blood pressure (p = 0.011) were significantly reduced. Other variables such as relatedness, high-density cholesterol, fasting blood sugar, diastolic blood pressure, and neutral fat scores were also improved in the experimental group, but these changes were not statistically significant. Conclusion: The autonomy support program offers a cost-effective and community-accessible health care strategy for middle-aged women and may be integrated into various nursing practices.

Attentional Resources and Independence in Basic and Instrumental Activities of Daily Living in Individuals with Intellectual Disabilities.

The relationship between attentional resources and functionality in individuals with intellectual disabilities (IDs) is clinically relevant. This study aimed to examine the possible relationship between the degree of ID and attentional resources, and to evaluate whether attentional resources predict the performance of basic and instrumental activities of daily living (ADL) in individuals with mild and moderate ID. This study, which employed a descriptive, cross-sectional, observational design, was conducted between July 2019 and May 2020. The sample consisted of 166 individuals divided into three groups: moderate ID, mild ID, and those without ID. These groups were compared for attentional functions (p < 0.001), obtaining an effect size ranging from medium to large. The results indicated that 40% of the variance in basic ADL performance was explained by the age of the participants, degree of disability, and sustained attention in individuals with ID. Additionally, 64% of the variance in instrumental ADL performance was explained by sustained, divided, and executive attention. Therefore, attentional resources appear to be associated with the performance of basic and instrumental ADL in individuals with mild and moderate ID.

From a critique of the principle of autonomy to an ethic of heteronomy.

Etymologically, autonomy is the ability to give oneself rules and follow them. It is an important principle of medical ethics, which can sometimes raise some tensions in the care relationship. We propose a new definition of ethics, the ethics of heteronomy: a self-normative, discursive and responsible autonomy. Autonomy cannot be considered without the responsibility each person must have towards others. In the care relationship, autonomy would be more the ability of each person to reach out to others than the ability to decide alone. The care relationship must be seen as an accompaniment of equals where each person allows the other to be rephrased. Autonomy would then no longer be absolute but relative to each situation. Being autonomous would become an ability for adaptation of the patient-doctor pair. The accompaniment allows the birth of a relationship of trust, giving the patient and the doctor the ability to touch and let themselves be touched, thus making each one progress in this reciprocal dialectic. The care relationship becomes the possibility of considering autonomy as a collective and not as an individual notion only. Paradoxically, by promoting the autonomy of the patient-doctor pair, they both develop their own autonomy.

Non-Psychiatric Treatment Refusal in Patients with Depression: How Should Surrogate Decision-Makers Represent the Patient's Authentic Wishes?

Patients with mental illness, and depression in particular, present clinicians and surrogate decision-makers with complex ethical dilemmas when they refuse life-sustaining non-psychiatric treatment. When treatment rejection is at variance with the beliefs and preferences that could be expected based on their premorbid or "authentic" self, their capacity to make these decisions may be called into question. If capacity cannot be demonstrated, medical decisions fall to surrogates who are usually advised to decide based on a substituted judgment standard or, when that is not possible, best interest. We propose that in cases where the patient meets the widely accepted cognitive criteria for capacity but is making decisions that appear inauthentic, the surrogate may best uphold patient autonomy by following a "restorative representation" model. We see restorative representation as a subset of substituted judgement in which the decision-maker retains responsibility for deciding as the patient would have, but discerns the decision their "truest self" would make, rather than inferring their current wishes, which are directly influenced by illness. Here we present a case in which the patient's treatment refusal and previously undiagnosed depression led to difficulty determining the patient's authentic wishes and placed a distressing burden on the surrogate decision-maker. We use this case to examine how clinicians and ethicists might better advise surrogates who find themselves making these clinically and emotionally challenging decisions.

Harmonising green informed consent with autonomous clinical decision-making: a reply to Resnik and Pugh.

Resnik and Pugh recently explored the ethical implications of routinely integrating environmental concerns into clinical decision-making. While we share their concern for the holistic well-being of patients, our response offers a different clinical and bioethical stance on green informed consent and patient autonomy. Contrary to the authors' lack of data to support their concerns about provider and patient willingness to engage in climate-related conversations, we provide evidence supporting their sustainability engagement and stress the importance of a proactive, anticipatory approach in healthcare to align with evolving societal values. If climate change is perceived as a politicised issue, though it is not inherently so, healthcare providers are professionally trained to address sensitive subjects and have a duty to inform patients about potential health risks. Recognising the environmental crisis as a health crisis underscores the direct connection between environmental hazards and patients' well-being. Our perspective advocates for integrating individual considerations, societal responsibilities and systemic changes to promote environmentally sustainable healthcare.

Abortion and the basis of equality: a reply to Miller.

Miller has recently argued that the standard liberal and moderate positions on abortion are incapable of grounding the claim that 'all non-disabled adult humans are equal'. The reason, he claims, is such accounts base the intrinsic moral worth of a human being on some property (or set of properties) which comes in degrees. In contrast, he argues that moral equality must reside in some binary property, such as the property of being human. In this paper, I offer three criticisms of Miller's position.

Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review.

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.

Undermining autonomy and consent: the transformative experience of disease.

Disease radically changes the life of many people and satisfies formal criteria for being a transformative experience. According to the influential philosophy of Paul, transformative experiences undermine traditional criteria for rational decision-making. Thus, the transformative experience of disease can challenge basic principles and rules in medical ethics, such as patient autonomy and informed consent. This article applies Paul's theory of transformative experience and its expansion by Carel and Kidd to investigate the implications for medical ethics. It leads to the very uncomfortable conclusion that disease involves transformative experiences in ways that can reduce people's rational decision-making ability and undermine the basic principle of respect for autonomy and the moral rule of informed consent. While such cases are limited, they are crucial for medical ethics and health policy and deserve more attention and further scrutiny.

Supporting self-determination in mental health recovery: Strategies employed by occupational therapists.

INTRODUCTION: Self-determination is a core component of mental health recovery and a predictor of positive outcomes. The literature calls for occupational therapists to lead practice change to greater recovery-orientation, including facilitating people's self-determination. However, systemic challenges thwart translation of policy into practice and therapists report a lack of confidence in implementing recovery-oriented principles. This study aimed to understand the strategies that mental health occupational therapists employ to support people's self-determination. METHODS: Data were collected through an international on-line questionnaire principally comprising two open-ended questions designed to elicit deep reflective personal accounts. Participants were asked about an experience in which they supported a person's self-determination and the factors that either facilitated or hindered this experience. Qualitative data were analysed using inductive thematic analysis, guided by constant comparative methods. FINDINGS: Thirty-four therapists, predominantly from Australia (n = 30), participated. Therapists described supporting self-determination as a multifaceted process that involved: (1) working on myself, (2) working with the person, and (3) working with others. They emphasised that the combined use of various strategies across these three areas of work was important to support people's self-determination. Further, awareness of and addressing issues of power in their practice was key. CONCLUSION: This study supports the translation of recovery-oriented principles into practice by revealing the nuanced strategies implemented by occupational therapists striving to support self-determination. Participants employed diverse strategies to empower people to take the 'driver's seat' in their mental health recovery journey. Insights from this study will support other occupational therapists to actualise recovery-oriented principles and better support self-determination in their practice. To effectively implement self-determination strategies, therapists must reflect on and address existing power differentials within mental health services, particularly between themselves and the people they support.

Raciocínio ético nas decisões médicas: dilema médico-paciente / Ethical reasoning in medical decisions: the physician-patient dilemma / Razonamiento ético en las decisiones médicas: dilema médico-paciente

Resumo A ética é essencial para garantir uma prática médica responsável e comprometida com o bem-estar do paciente e da sociedade. Diante disso, a compreensão da autonomia do paciente e sua participação ativa nas decisões sobre tratamentos e procedimentos médicos são fundamentais. Realizou-se revisão sistemática da literatura, entre dezembro de 2018 e maio de 2023, com o objetivo de auxiliar o debate ético e a conduta profissional acerca do que deve ser ponderado em uma situação de conflito entre a decisão médica e a vontade do paciente e, assim, fornecer perspectivas sobre o gerenciamento dessa temática. Os 18 artigos selecionados abordam questões éticas relacionadas à relação médico-paciente, destacando a importância das diretivas antecipadas de vontade, comunicação honesta e respeito à autonomia do paciente. Assim, busca-se fornecer perspectivas e orientações para o gerenciamento de conflitos éticos na prática médica.

Abstract Ethics is essential to ensure responsible medical practice, committed to the well-being of patients and society. Hence, understanding patient autonomy and their active participation in decisions about treatments and medical procedures is paramount. A systematic literature review was conducted on articles published between December 2008 and May 2023 to assist in the ethical debate and professional conduct about what should be considered in a conflict between the medical decision and the patient's wishes, and thus provide perspectives on how to manage this issue. The 18 articles selected address ethical issues related to physician-patient relations, highlighting the importance of advance directives, honest communication and respect for patient autonomy. We aim to provide perspectives and guidelines for managing ethical conflicts in medical practice.

Resumen La ética es esencial para garantizar una práctica médica responsable y comprometida con el bienestar de los pacientes y la sociedad. Así, es fundamental comprender la autonomía del paciente y su participación activa en las decisiones sobre tratamientos y procedimientos médicos. Se realizó una revisión sistemática de la literatura entre diciembre de 2018 y mayo de 2023, con el objetivo de aportar al debate ético y la conducta profesional sobre lo que debe considerarse en una situación de conflicto entre la decisión médica y la voluntad del paciente, y así proporcionar perspectivas sobre la gestión de este tema. Los 18 artículos seleccionados abordan cuestiones éticas sobre la relación médico-paciente, destacando la importancia de las voluntades anticipadas, la comunicación honesta y el respeto a la autonomía del paciente. Así, se espera ofrecer perspectivas y directrices para gestionar los conflictos éticos en la práctica médica.

Bioética em odontologia: autonomia dos pacientes em clínicas de ensino / Bioethics in dentistry: patient autonomy in teaching clinics / Bioética en odontología: la autonomía del paciente en los centros docentes

Resumo Este artigo foi desenvolvido com o objetivo de analisar o respeito ao princípio da autonomia na assistência aos pacientes atendidos em clínicas odontológicas de ensino, do ponto de vista de professores e alunos. Com esse propósito, foram estudadas duas faculdades públicas do estado do Rio de Janeiro. Os dados das pesquisas foram obtidos por meio da realização de entrevistas individuais e grupos focais com alunos do último ano da graduação, entrevistas com professores e observação participante. Os resultados revelaram que os atendimentos nas instituições de ensino analisadas por vezes não contemplam o respeito ao princípio da autonomia dos pacientes. A formação profissional observada reproduz o modelo hegemônico de educação tecnicista e é regida pelo estabelecimento de uma relação paternalista entre profissionais e pacientes, o que contribui para uma constante, e indesejável, violação dos direitos dos pacientes.

Abstract This article analyzes the respect for patient autonomy in dental teaching clinics as perceived by professors and students. Data were obtained by means of individual interviews and focus groups with senior students, teachers interviews and participant observation in two public state universities. Results showed that care provision at the analyzed educational institutions oftentimes does not include respect for patient autonomy. The observed professional training reproduces the hegemonic technicist education and is informed by a paternalistic physician-patient relation that contributes to a constant and undesirable violation of patient rights.

Resumen Este artículo tiene el objetivo de analizar el respeto al principio de autonomía en la atención a los pacientes de los centros odontológicos docentes desde el punto de vista de profesores y estudiantes. Para ello, se analizaron dos universidades públicas del estado de Río de Janeiro. Los datos de la investigación se obtuvieron de entrevistas individuales y grupos focales realizadas a estudiantes en el último año de graduación, de entrevistas a docentes y observación participante. Los resultados revelaron que la atención en los centros educativos analizados, en ocasiones, no incluyen el respeto al principio de autonomía de los pacientes. La formación de los profesionales reproduce el modelo hegemónico tecnicista y se rige por el establecimiento de una relación paternalista entre los profesionales y los pacientes, lo que contribuye a una constante e indeseable violación de los derechos de los pacientes.

The perception of people with physical disabilities about exercising autonomy in a federal university / La percepción de personas con discapacidades físicas con respecto al ejercicio de la autonomía en una universidad federal / Percepção de pessoas com deficiência física acerca do exercício da autonomia em uma universidade federal

ABSTRACT Introduction: preconceptions towards people with disabilities are still present in our society; they arise from ancient behaviors and from the biomedical model, both rooted in human attitudes. Objective: to describe the potentialities/strengths and inabilities/weaknesses faced by people with disabilities to exercise their autonomy and to show the ways in which people with disabilities exercise their autonomy. Method: this is a single-case study with a qualitative approach. Twenty-two individuals with physical disabilities were interviewed, with students and employees from a university in southern Brazil among them. Data analysis was performed by means of the Collective Subject Discourse The comprehensive and interpretive analysis of the meanings that emerged from the participants' statements were associated with the theoretical framework of autonomy by Adela Cortina, Diego Gracia and Lawrence Kohlberg. Results: potentialities/weaknesses can be observed in the exchange spaces and in the information provided by the university. At the same time, inability/weakness is perceived in preconception, welfarism and all the ableism faced by people with disabilities. Conclusions: lack of information is one of the main elements that foster preconception and it is essential to fight against it for the inclusion of people with disabilities.

RESUMEN Introducción: en nuestra sociedad, todavía pueden encontrarse preconceptos con respecto a las personas con discapacidades que derivan de comportamientos de la antigüedad y del modelo biomédico y que están arraigados en las actitudes humanas. Objetivo: describir las potencialidades/fortalezas y las inhabilidades/debilidades afrontadas por las personas con discapacidades para ejercer su autonomía y demonstrar las formas en las que pueden hacerlo. Método: estudio de caso único y con enfoque cualitativo. Se entrevistó a un total de 22 personas con discapacidades, entre ellas, alumnos y empleados de una universidad del sur de Brasil. El análisis de los datos se realizó por medio del Discurso del Sujeto Colectivo. El análisis integral e interpretativo de los significados que emergieron de los testimonios de los participantes se asoció al referencial teórico de autonomía de Adela Cortina, Diego Gracia y Lawrence Kohlberg. Resultados: pueden observarse potencialidades/fortalezas en los espacios de intercambio y en la información que proporciona la Universidad. A la vez que la inhabilidad/debilidad se percibe en el preconcepto, el asistencialismo y en la totalidad del capacitismo al que hacen frente las personas con discapacidades. Conclusiones: la falta de información es uno de los principales elementos que fomentan el preconcepto y es esencial combatirla para la efectiva inclusión de las personas con discapacidades.

RESUMO Introdução: preconceitos com a pessoa com deficiência ainda estão presentes em nossa sociedade, esses são advindos de condutas da antiguidade e do modelo biomédico que estão arraigados nas atitudes humanas. Objetivo: descrever as potencialidades/fortalezas e inabilidades/fragilidades enfrentadas pelas pessoas com deficiência para o exercício da sua autonomia e demonstrar os modos pelos quais as pessoas com deficiência exercem a sua autonomia. Método: trata-se de um estudo de caso único e de abordagem qualitativa. Foram entrevistadas vinte e duas pessoas com deficiência física, dentre elas, alunos e servidores de uma universidade do Sul do Brasil. A análise de dados foi realizada por meio do Discurso do Sujeito Coletivo. A análise compreensiva e interpretativa dos significados emergidos das falas dos participantes foram associadas ao referencial teórico da autonomia de Adela Cortina, Diego Gracia e Lawrence Kohlberg. Resultados: as potencialidades/fortalezas podem ser observadas nos espaços de trocas e informação proporcionados pela universidade. Ao mesmo tempo que a inabilidade/fragilidade é percebida no preconceito, assistencialismo e todo o capacitismo enfrentado pelas pessoas com deficiência. Conclusão: a falta de informação é um dos principais fomentadores do preconceito e combatê-lo é essencial para a inclusão das pessoas com deficiência.

Autogestão do diabetes na adolescência: experiência de jovens adultos e pais portugueses / Autogestión de la diabetes en la adolescencia: experiencias de jóvenes adultos y padres portugueses / Self-management of diabetes in adolescence: experience of Portuguese young adults and their parents

Resumo Objetivo Identificar os fatores que facilitam ou dificultam a construção da autonomia na adolescência através da experiência de jovens adultos com diabetes tipo 1 e seus pais. Métodos Estudo de natureza qualitativa, descritiva e exploratória. Foram realizadas duas entrevistas de grupo focal, uma com nove jovens adultos peritos na gestão de sua doença e outra com sete pais. Para análise dos dados, foram usados análise de conteúdo temática e categorial, com particularidades de entrevista de grupo focal, e recurso ao software NVIVO 12. Resultados Emergiram duas grandes categorias e dez subcategorias relativas aos fatores que facilitaram (sistemas de suporte, conhecimentos, alimentação, bomba de insulina, responsabilização precoce pela gestão da terapêutica, características dos jovens), e dificultaram (regime terapêutico, estigma, atitude dos profissionais de saúde, características dos jovens, conhecimento) o desenvolvimento da autonomia na gestão da doença. Conclusão A autonomia na gestão do diabetes envolve vários desafios aos adolescentes, o que requer adequação de atitudes e intervenções de profissionais. Além da gestão tradicional da condição de saúde, é essencial abordar temas relacionados com a socialização dos adolescentes, procurando estratégias inovadoras que promovam o coping e a qualidade de vida. Os resultados deste estudo possibilitam refletir sobre a relação terapêutica com os adolescentes, salientando a importância de individualizar cuidados e respostas inovadoras às suas necessidades específicas.

Resumen Objetivo Identificar los factores que facilitan o dificultan la construcción de la autonomía en la adolescencia a través de la experiencia de jóvenes adultos con diabetes tipo 1 y sus padres. Métodos: Estudio de naturaleza cualitativa, descriptiva y exploratoria. Se realizaron dos entrevistas de grupo focal, una con nueve jóvenes adultos expertos en la gestión de su enfermedad y otra con siete padres. Para el análisis de datos se utilizó el análisis de contenido temático y categorial, con particularidades de entrevista de grupo focal y recurso del software NVIVO 12. Resultados Surgieron dos grandes categorías y diez subcategorías relativas a los factores que facilitaron el desarrollo de la autonomía en la gestión de la enfermedad (sistemas de apoyo, conocimientos, alimentación, bomba de insulina, responsabilización temprana de la gestión de la terapéutica, características de los jóvenes) y los que la dificultaron (régimen terapéutico, estigma, actitudes de los profesionales de la salud, características de los jóvenes, conocimientos). Conclusión La autonomía en la gestión de la diabetes incluye muchos desafíos para los adolescentes, lo que requiere adaptación de actitudes e intervenciones de profesionales. Además de la gestión tradicional del estado de salud, es esencial abordar temas relacionados con la socialización de los adolescentes y buscar estrategias innovadoras que promuevan el coping y la calidad de vida. Los resultados de este estudio permiten reflexionar sobre la relación terapéutica con los adolescentes y destacar la importancia de individualizar los cuidados y las respuestas innovadoras para sus necesidades específicas.

Abstract Objective To identify the factors that facilitate or hinder the construction of autonomy in adolescence through the experience of young adults with type-1 diabetes and their parents. Methods This was a qualitative, descriptive, and exploratory study. Two focus group interviews were conducted: one with nine young adults who were experts in managing their illness and the other with seven parents. Thematic and categorical content analysis was used for data analysis, with particularities of a focus group interview and the use of the NVIVO 12 software. Results Two major categories and ten subcategories related to factors that facilitated (support systems, knowledge, diet, insulin pump, early responsibility for managing therapy, and characteristics of young people) and hindered (therapeutic regimen, stigma, attitude of health professionals, characteristics of young people, and knowledge) the development of autonomy in disease management emerged. Conclusion Autonomy in the management of diabetes involves several challenges for adolescents, which requires adaptation of attitudes and interventions by professionals. In addition to the traditional management of the health condition, addressing issues related to the socialization of adolescents is essential, looking for innovative strategies that promote coping and quality of life. The results of this study make it possible to reflect on the therapeutic relationship with adolescents, emphasizing the importance of individualizing care and innovative responses to their specific needs.

Older adults' experiences of self-determination when needing homecare services-an interview study.

BACKGROUND: Self-determination has been shown to be an important factor in mental health and wellbeing, but from the homecare recipients' point of view, autonomy and self-determination is not fully integrated into homecare services. The aim of this study was to explore older adults' experiences of self-determination when needing homecare services. METHODS: In 2018, a qualitative descriptive study was conducted and a convenience sample of 15 older adults from 3 homecare service facilities were invited to participate in individual interviews. Data were analysed using qualitative content analyse. RESULTS: The theme Transitioning from self-determination as independence towards self-determination as shared decision-making emerged through the older adults' narratives. This 'transition' is one in which older adult's understanding of self-determination and self-esteem was transitioning towards the acceptance of shared decision-making. The person's inner strength and willingness to make decisions was promoting to enact and preserve independence. Accepting one's dependence on others and being in a positive atmosphere were described as promoting self-determination and shared decision-making, and vice versa. The above overarching theme permeated all subthemes, which included: mobilising inner strength to enact independence; accepting increasing dependence on others; and being influenced by the atmosphere. CONCLUSIONS: The study contributes increased understanding of older adults' experiences of self-determination. The results can act as a guide when planning future person-centred care interventions in the context of homecare services and help improve homecare services' ability to meet the needs of older adults. To summarise, older adults' reflections on their own self-determination highlighted relationships with other people as important for shared decision-making, which could help preserve older adults' autonomy and self-esteem.

Abortion restrictions and medical residency applications.

Residency selection is a challenging process for medical students, one further complicated in the USA by the recent Dobbs v Jackson Women's Health Organization (Dobbs) decision over-ruling the federal right to abortion. We surveyed medical students to examine how Dobbs is influencing the ideological, personal and professional factors they must reconcile when choosing where and how to complete residency.Between 6 August and 22 October 2022, third-year and fourth-year US medical students applying to US residency programmes were surveyed through social media and direct outreach to medical schools. Analysis of quantitative and qualitative data from 494 responses was performed to assess downstream effects of Dobbs on residency applicants' family, health and career choices.Most respondents said changes in abortion access would likely or very likely influence their decision regarding location of considered residency programme (76.9%), where to start a family (72.2%) and contraceptive planning for them or their partner (57.9%). Cis-gender females were more influenced by Dobbs regarding where (5 (4, 5) p<0.001) and when (3 (3, 5) p<0.001) to start a family. In qualitative responses, medical trainees highlighted the importance of abortion access for their patients, themselves and their loved ones.Medical trainees are incorporating state abortion access into their residency programme choices. Future physicians care about both the quality of care they will be able to provide and their own health. For personal and professional reasons, reproductive healthcare access is now a key factor in residency match decisions.

Resultados de un programa educativo orientado a la promoción de la independencia y autonomía funcional

Introducción: El envejecimiento es un proceso fisiológico que genera cambios en la salud de los adultos mayores. Una de las esferas que con mayor frecuencia se afecta es la psicosocial, en la cual se presenta pérdida de la independencia y autonomía funcional. Objetivo: Evaluar los resultados de un programa educativo orientado a la promoción de la independencia y autonomía funcional. Métodos: Se realizó un estudio cuasiexperimental de intervención antes - después. El universo fue de 697 adultos mayores residentes en las parroquias rurales del cantón Penipe, en la provincia Chimborazo. La muestra quedó conformada por 249 ancianos. Se aplicó un programa educativo durante 8 meses que incluyó como variable el nivel de conocimiento sobre hábitos y estilos de vida saludables y la dependencia. Se utilizó la prueba de McNemar para identificar cambios en el nivel de conocimiento sobre hábitos y estilos de vida. Resultados: Promedio de edad de 68,32 años, predominio del sexo femenino (55,02 %) y con comorbilidades (73,49 %). En el 42,97 % de los sujetos se identificó algún tipo de dependencia, con predominio de la dependencia escasa (45,79 %). Durante el pretest se identificó un nivel de conocimiento bajo en el 63,05 %, durante el postest solo el 15,66 % mantenía un nivel bajo (p= 0,02). Conclusiones: El programa educativo mejora el nivel de conocimiento sobre la importancia de adoptar hábitos y estilos de vida saludables para promocionar la independencia y la autonomía funcional.

Introduction: Aging is a physiological process that generates changes in the health of people over 60 years of age. One of the spheres that is most frequently affected is psychosocial, in which there is loss of independence and functional autonomy. Objective: To evaluate the results of an educational program aimed at promoting independence and functional autonomy. Methods: A quasi-experimental before-after intervention study was carried out. The universe was 697 older adults residing in the rural parishes of the Penipe canton in the Chimborazo province. The sample was made up of 249 elderly people. An educational program was applied for 8 months that included as a variable the level of knowledge about healthy habits and lifestyles and dependency. The McNemar test was used to identify changes in the level of knowledge about habits and lifestyles. Results: Average age of 68.32 years, predominance of female sex (55.02%) and with associated comorbidities (73.49%). Some type of dependency was identified in 42.97% of the subjects, with a predominance of low dependency (45.79%). During the pretest, older adults with a low level of knowledge about healthy habits and lifestyles predominated (63.05%). During the posttest, the average level of knowledge predominated (51.81%). Conclusions: The educational program improves the level of knowledge about the importance of adopting healthy habits and lifestyles to promote independence and functional autonomy.