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Introducción: promover autonomía significa transitar desde un modelo paternalista hacia uno que posi-cione en un rol activo a las personas durante el encuentro clínico, con participación en la toma de deci-siones relativas al cuidado de su salud. Este artículo describe la percepción de usuarios que viven con multimorbilidad respecto del ejercicio de su autonomía durante la atención clínica. Método: estudio de caso cualitativo en usuarios con multimorbilidad atendidos en un centro de salud familiar de Santiago (Chile).Se realizó análisis de contenido según Krippendorf. Resultados: la muestra quedó conformada por 19 participantes adultos con un promedio de 2.7 condiciones crónicas de salud. Del análisis de contenido de las entrevistas emergieron tres categorías: a) significado atribuido por los usuarios a la autonomía en la atención de salud, b) elementos que debe considerar una atención en salud que respete la autonomía del usuario y c) participación durante la atención clínica. Conclusiones: frente al aumento de las condicio-nes crónicas de salud es imperativo repensar la forma de brindar atención de salud, relevando el valor de la participación usuaria a través de la toma de decisiones compartida como expresión de respeto de su autonomía y una forma de fomentar el cuidado centrado en las personas
Aim: Promoting autonomy means changing from a paternalistic model to one in which individuals play an active role in their healthcare, which their participation in medical decision-making will reflect. This issue needs to be sufficiently explored in Chile, so this article aims to describe the perception of users liv-ing with multimorbidity regarding their ability to exercise autonomy in clinical care. Method: Qualitative case study conducted in a sample of patients with multimorbility from a family health center in Santiago de Chile. Content analysis was performed according to the Krippendorf method. Results: The sample com-prised 19 adult participants with an average of 2.7 chronic health conditions. Three categories emerged from the content analysis of the interviews: (a) Meaning attributed by users to autonomy in health care, (b) Elements that health care respecting user autonomy should consider, and (c) Participation during clinical care. Conclusions: Considering the sustained increase in chronic health conditions, it is impera-tive to rethink how health care is provided, highlighting the value of user participation through shared decision-making as an expression of respect for individuals' autonomy and the promotion of patient-cen-tered care
Objetivo: promover a autonomia significa passar de um modelo paternalista para um que posicione as pessoas num papel ativo durante o encontro clínico, com participação na tomada de decisões relaciona-das com os seus cuidados de saúde. Este manuscrito descreve a percepção de usuários que convivem com multimorbidade quanto ao exercício de sua autonomia durante o atendimento clínico. Método: estudo de caso qualitativo em usuários com multimorbidade atendidos em um Centro de Saúde da Família de Santiago, no Chile. A análise de conteúdo foi realizada segundo Krippendorf. Resultados: a amostra foi composta por 19 participantes adultos com média de 2.7 condições crônicas de saúde. Da análise de conteúdo das entrevistas emergem três categorias: a) Significado atribuído pelos usuários à autonomia no cuidado em saúde, b) Elementos que um cuidado de saúde que respeite a autonomia do usuário deve considerar, e c) Participação durante o atendimento clínico. Conclusões: face ao aumento das condições crónicas de saúde, é imperativo repensar a forma de prestar cuidados de saúde, destacando o valor da participação dos pacientes através da tomada de decisão partilhada como expressão de respeito pela sua autonomia e forma de promover o cuidado centrado nas pessoas
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Humans , Chile , DiseaseABSTRACT
To explore the barriers and facilitators of shared decision making, 23 clinicians were selected for semi-structured interviews by purpose sampling and convenience sampling with phenomenological methods in qualitative research, and 7-step of Colaizzi was used to analyze the interview data. Three themes and twelve subthemes were extracted, included: individual factors of doctors (role cognition, perceived outcomes, communication skills, clinical expertise, cognitive bias) , individual factors of patients (general information, lack of disease knowledge, willingness to participate in decision making) and environmental factors (clinical situation, social environment, resources and social influence) . There were many barriers and facilitators in the implementation of doctor-patient shared decision making. It is necessary to scientifically analyze and actively deal with the influence of each factor, and find reasonable countermeasures to promote the clinical implementation of shared decision making.
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@#BACKGROUND: Shared decision-making (SDM) has broad application in emergencies. Most published studies have focused on SDM for a certain disease or expert opinions on future research gaps without revealing the full picture or detailed guidance for clinical practice. This study is to investigate the optimal application of SDM to guide life-sustaining treatment (LST) in emergencies. METHODS: This study was a prospective two-round Delphi consensus-seeking survey among multiple stakeholders at the China Consortium of Elite Teaching Hospitals for Residency Education. Participants were identified based on their expertise in medicine, law, administration, medical education, or patient advocacy. All individual items and questions in the questionnaire were scored using a 5-point Likert scale, with responses ranging from “very unimportant” (a score of 1) to “extremely important” (a score of 5). The percentages of the responses that had scores of 4-5 on the 5-point Likert scale were calculated. A Kendall’s W coefficient was calculated to evaluate the consensus of experts. RESULTS: A two-level framework consisting of 4 domains and 22 items as well as a ready-to-use checklist for the informed consent process for LST was established. An acceptable Kendall’s W coefficient was achieved. CONCLUSION: A consensus-based framework supporting SDM during LST in an emergency department can inform the implementation of guidelines for clinical interventions, research studies, medical education, and policy initiatives.
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Objective:This paper introduces the concepts of " patient-centered cell therapy research management model", to provide reference for domestic medical institutions which conduct cell therapy clinical trials.Methods:We reviewed and summarized the experiences of conducting cell therapy at Peking University Shenzhen Hospital, including challenges and response plans regarding to the technology assessment, ethical evaluation risks and regulatory compliance. According to which, this paper aims to explore the reflections and practical experience of establishing a patient-centered, multi-stakeholder shared decision-making research management system.Results:The " patient-centered cell therapy research management model" ensures the reliability of research results through multi-stakeholder engagement in decision-making and management, adequate technical evaluation, effective ethical review and harmonized scientific research management, which not only meets the urgent health needs of the patient, but also promotes the standardized development of emerging technologies.Conclusions:The " patient-centered cell therapy research management model" is tailored for the cell therapy research, it is important to promote its further assessment and applications.
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Objective:To explore the influencing factors of psychological stress in patients with coronary heart disease, and the effect path of joint decision-making between doctors and patients on psychological stress and to provide reference for the formulation of management plan for physical and mental health of patients with coronary heart disease.Methods:From July 2017 to April 2022, 715 retired patients with coronary heart disease hospitalized in General Hospital of the People′s Liberation Army and Air Force Hospital in Western Military Theater of the People′s Liberation Army were investigated adopted cross-sectional survey method by simple random sampling using general information questionnaire, Stress Response Questionnaire, Shared Decision-making Questionnaire between Doctors and Patients, Uncertainty in Illness Scale and Simple Coping Style Questionnaire. By using structural equation modeling, the direct and indirect influence paths of shared decision-making between doctors and patients on psychological stress were analyzed.Results:The scores of psychological stress, shared decision-making, uncertainty in illness, positive coping style and negative coping style were 49.81 ± 11.06, 79.24 ± 8.68, 76.40 ± 12.56, 21.67 ± 5.51 and 8.90 ± 3.12. Correlation analysis showed that the scores of psychological stress were positively correlated with the scores of uncertainty in illness and negative coping style ( r=0.661, 0.591, both P<0.01), and negatively correlated with the scores of shared decision-making between doctors and patients and positive coping style ( r=-0.623, -0.451, both P<0.01). Path analysis showed that shared decision-making between doctors and patients had a direct effect on psychological stress, accounting for 23.81% of the total effect; the uncertainty in illness, positive coping style and negative coping style played a part of intermediary role between the joint decision-making between doctors and patients and psychological stress, accounting for 32.35%, 8.40% and 17.93% of the total effect respectively; the uncertainty in illness and negative coping style had a chain mediating effect between them, accounting for 17.51% of the total effect. Conclusions:It suggests that the shared decision-making between doctors and patients with coronary heart disease is not only directly related to psychological stress, but also indirectly related to psychological stress through uncertainty in illness and coping style, among which coping style may play a role of "pivot" to a certain extent.
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Objective:To construct Doctor-Nurse-Patient shared decision-making framwork for breast cancer surgery patients, so as to provide a foundation for clinical practice.Methods:The content of the shared decision-making framwork were initially constructed through systematic literature search and group discussion. From March to May 2021, 24 experts were consulted by the Delphi method, and the weight of each element would be determined by the analytic hierarchy process.Results:A total of 2 rounds of expert letter questionnaires were implemented. The authority coefficient of the experts in this study was 0.832, the Kendall coefficient of the experts in the first round was 0.130-0.261 ( P<0.01), and the Kendall coefficient of the experts in the second round was 0.130-0.272 ( P<0.01). The final shared decision-making framwork includes 5 first-level indicators, 15 second-level indicators and 52 third-level indicators. Conclusions:The Doctor-Nurse-Patient shared decision-making framwork of breast cancer surgery patients constructed in this study is scientific and practical, and provides a reference for clinical practice of shared decision-making in the future.
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On the basis of combing and reflecting on the literature related to doctor-patient shared decision-making, this paper proposed the necessity of discussing the ethical basis of shared decision-making from a theoretical perspective, and attempted to analyze the suitability of Aristotle’s "friendship" ideology as its ethics’ basis. At the practical level, starting from Ropohl’s technical ethics, it was recommended to establish a shared decision-making responsibility sharing system, providing methodological guidelines for the clinical application of shared decision-making.
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The retention of emergency patients is a common problem faced by hospitals worldwide. In addition to medical problems, social, family, economic and other problems will also cause patients to stay in the emergency department. It not only brings challenges to patients’ own disease treatment and hospital operation and management, but also brings ethical dilemmas. Taking the service cases of medical social workers who involved in stranded patients in Shanghai E Hospital as an example, this paper analyzed 20 service records and interviews with social workers receiving cases, and combed the ethical dilemmas faced by medical social workers in the process of involving in emergency stranded patients. It was found that medical social workers faced many ethical dilemmas in the process of involving in emergency stranded patients, such as interpersonal relations and relevant legal regulations, the right to life and health and the right to informed consent, the self-determination of case owners and the allocation of medical resources. In this regard, it is suggested to solve the problem of patient retention by advocating the improvement of relevant systems and policies, building cooperative teams to smooth referral channels, strengthening education, and promoting family shared decision-making.
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The burden of cardiovascular disease is heavy, the condition is complex, and the clinical decision-making methods are diverse. Taking coronary heart disease and implantable cardioverter defibrillator implantation as examples, this paper illustrated the shared decision-making framework in cardiovascular disease. Patient participation in diagnosis and treatment decision-making will enhance their sense of control and gain. Strategies to improve the quality of shared decision-making include developing effective decision-making aids, enhancing patients’ risk perception abilities, and empowering patients to enhance their decision-making abilities.
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Traditional Chinese medicine(TCM) treatment models are rich and unique, including patient-led decision-making, doctor-led decision-making, and doctor-patient shared decision-making. However, doctor-led decision-making is more common. The connotation of TCM shared decision-making is rich, including not only the smooth flow of information and the encouragement and support of equal participation by patients, but also the discussions on various aspects of diet, exercise, emotions, daily life, physiology, psychology, society, and nature that affect health based on the unique holistic concept of TCM. Integrating "shared decision-making" into the treatment process of TCM can be divided into four steps according to the process of "diagnosis and treatment". TCM shared decision-making has advantages and limitations, requiring both doctors and patients to meet certain objective conditions, and there are also special situations in TCM treatment where shared decision-making cannot be applied. Multiple ways to enhance the decision-making ability of doctors and patients, scientific evaluation and matching treatment plans, development of decision-making aids, and smooth channels for information transmission can all enhance the shared decision-making ability of doctors and patients.
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Doctor-patient shared decision-making is a medical decision-making model that involves mutual interaction and communication between doctors and patients. The lack of patient’s subjectivity is mainly manifested in the departure of patients’ "subject" caused by the deviation of medical purpose and the influence of traditional culture, the weak position of patients formed by the difference in the strength of social role, the obstacle of doctor-patient communication caused by the difference of disease situation perception, etc., which has become a prominent problem hindering the development of doctor-patient shared decision-making mode. Taking the mutual subjectivity of doctors and patients as the premise, effective doctor-patient communication as the basis, and doctor-patient shared decision-making as the main axis, the construction of concentric medical care under a doctor-patient community with a shared future can help build up the subjectivity and mutual relationship between doctors and patients, and provide a path for the retrieval of patient subjectivity.
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Constructing a doctor-patient community with a shared future requires efforts from both the medical supply side and the patient demand side, with special attention to the needs of patients. Continuously meeting and improving the needs of patients is the starting point, ultimate goal, and evaluation standard for constructing a doctor-patient community with a shared future. Therefore, this paper proposed the proposition of "what patients need", that is, what needs do patients have and how to meet their needs. The fundamental needs of patients are to diagnose and treat diseases and recover from illness, which are specifically manifested in the demands to narrate the disease’s feelings, the willingness to participate in medical decision-making, the experience of diagnosis and treatment in the process of medical treatment, and the satisfaction evaluation of the hospital’s performance appraisal. On the basis of clarifying the needs of patients, this paper proposed the paths and methods to meet patients’ needs, and provided new ideas for constructing a doctor-patient community with a shared future.
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Abstract: Background: It is challenging to make informed decision in genetic counseling. Shared decision-making provides a chance in balancing the information and preferences between counselors and counselees. However, the status and prescriptions of shared decision-making have not been extensively studied in genetic counseling. Aim: To develop an up-to-date literature review of the shared decision-making in genetic counseling, identify knowledge gaps, and provide inspiration and suggestions for the development and practice of genetic counseling. Methods: "Genetic Counseling" and "Shared decision-making" were used to search in PubMed, Web of Science, Embase, Wanfang, CNKI and CBM databases. The search deadline was March 26, 2021. Results: A total of 22 articles were included, and four themes were identified: how people involved in genetic counseling, different stakeholders involved in SDM, multiple facilitators and barriers to SDM and the effectiveness of SDM in genetic counseling. Conclusion: Each participant needs to recognize their boundaries and make the best effort to involve in the shared decision-making. In the future, multinational studies should be considered for bringing shared decision-making to the global scale and well-designed studies are required to explore the long-term impact of shared decision-making in genetic counseling.
Resumen: Antecedentes: Es un reto tomar una decisión informada en el asesoramiento genético. La toma de decisiones compartida ofrece una oportunidad para equilibrar la información y las preferencias entre los asesores y los pacientes. Sin embargo, el estado y las prescripciones de la toma de decisiones compartida no se han estudiado ampliamente en el asesoramiento genético. Objetivo: Desarrollar una revisión bibliográfica actualizada de la toma de decisiones compartida en el asesoramiento genético, identificar las lagunas de conocimiento y proporcionar inspiración y sugerencias para el desarrollo y la práctica del asesoramiento genético. Métodos: "Genetic Counseling" y "Shared decision-making" se utilizaron para buscar en las bases de datos PubMed, Web of Science, Embase, Wanfang, CNKI y CBM. La fecha límite de búsqueda fue el 26 de marzo de 2021. Resultados: Se incluyó un total de 22 artículos y se identificó cuatro temas: cómo se involucran las personas en el asesoramiento genético, las diferentes partes interesadas involucradas en la GDS, los múltiples facilitadores y barreras para la GDS y la efectividad de la GDS en el asesoramiento genético. Conclusión: Cada participante necesita reconocer sus límites y hacer el mejor esfuerzo para involucrarse en la toma de decisiones compartida. En el futuro, se debe considerar la realización de estudios multinacionales para llevar la toma de decisiones compartida a la escala global y se requieren estudios bien diseñados para explorar el impacto a largo plazo de la toma de decisiones compartida en el asesoramiento genético.
Resumo Antecedentes: Tomar uma decisão informada em aconselhamento genético é um desafio. A tomada de decisão compartilhada (SDM) fornece uma oportunidade para contrabalançar a informação e preferências entre conselheiros e aconselhados. Entretanto, o status e prescrições da tomada de decisão compartilhada não têm sido extensivamente estudados em aconselhamento genético. Objetivo: Desenvolver uma revisão de literatura atualizada sobre a tomada de decisão compartilhada em aconselhamento genético, identificar lacunas no conhecimento e fornecer inspiração e sugestões para o desenvolvimento e prática do aconselhamento genético. Métodos: "Genetic Counseling" e "Shared decision-making" foram usados para pesquisar nos bancos de dados PubMed, Web of Science, Embase, Wanfang, CNKI e CBM. A data limite para a pesquisa foi 26 de março de 2021. Resultados: Um total de 22 artigos foram incluídos e quatro temas foram identificados: como pessoas se envolveram em aconselhamento genético, diferentes interessados envolvidos em SDM, facilitadores e barreiras múltiplas à SDM e efetividade da SDM em aconselhamento genético. Conclusão: Cada participante necessita reconhecer seus limites e fazer os melhores esforços para se envolver em tomada de decisão compartilhada. No futuro, estudos multinacionais devem ser considerados para trazer a tomada de decisão compartilhada a uma escala global e estudos bem desenhados são requeridos para explorar o impacto a longo prazo da tomada de decisão compartilhada em aconselhamento genético.
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Humans , Decision Making, Shared , Genetic CounselingABSTRACT
Resumo O planejamento antecipado de cuidados é um processo de discussões entre profissionais de saúde e pacientes que permite a tomada de decisão compartilhada quanto a objetivos de cuidados de saúde, atuais e/ou futuros, com base nos desejos e valores do paciente e em questões técnicas do cuidado. É considerado fundamental na prestação de cuidados de excelência em fim de vida, permitindo que profissionais de saúde alinhem os cuidados prestados com o que é mais importante para o paciente. Apesar de seus benefícios, ainda é muito pouco realizado na prática clínica, especialmente no Brasil. Considerando a necessidade de guias práticos de planejamento antecipado de cuidados adaptados à realidade brasileira, pautados em estratégias de comunicação empática, este estudo é uma proposta de guia baseada em revisão integrativa da literatura (PubMed e SciELO), com recomendações de evidências atuais, incluindo instrumentos validados para o português (Brasil), para facilitar sua implementação na prática clínica.
Abstract Advance care planning is a process of discussion between healthcare professionals and patients that enables shared decision-making on current and/or future healthcare goals, based on patients' desires and values and technical care issues. Advance care is considered essential in the provision of quality terminal care, allowing healthcare professionals to align the care provided with what is most important to the patient. Despite its benefits, it is still underused in clinical practice, especially in Brazil. Considering the need for practical guides for advance care planning adapted to the Brazilian reality, drawing on empathetic communication strategies, this study is a guide proposal based on an integrative literature review (PubMed and SciELO), with recommendations of current evidence, including instruments validated for Portuguese (Brazil), to facilitate its implementation in clinical practice.
Resumen La planificación anticipada de atención es un proceso de discusión entre los profesionales de la salud y los pacientes que permite la toma de decisiones relacionadas a los objetivos de atención médica actuales y/o futuros, basadas en los deseos y valores del paciente y en cuestiones técnicas de la atención. Resulta ser una apropiada atención terminal, ya que estos profesionales pueden adecuar la atención con los deseos del paciente. Pese a sus beneficios, es poco realizada en la práctica clínica, especialmente en Brasil. Dada la necesidad de guías prácticas para la planificación anticipada de atención, adaptadas a la realidad brasileña y basadas en estrategias comunicativas empáticas, este estudio propone una guía a partir de una revisión integradora de la literatura (PubMed y SciELO), con recomendaciones de evidencia actual, incluidos instrumentos validados para el portugués brasileño para facilitar su aplicación en la práctica clínica.
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Palliative Care , Terminal Care , Brazil , Health Personnel , Communication , Medical Care , Advance Care Planning , Decision Making, SharedABSTRACT
In recent decades, the clinical procedures surrounding informed consent in healthcare settings have experienced a revolution for the better. However, the method by which doctors get informed consent is still challenging. The causes of this ambiguity are numerous. Part of the doubt stems from the intellectual dullness of key foundational notions. The complexities of therapeutic communication, the importance of autonomy, and the changing nature of the doctor-patient relationship have all contributed to the ongoing uncertainty in many clinical settings. Many patients who face medical dilemmas are unsure of which therapy options to take. The informed consent helps in minimizing uncertainty and empowering patients’ in choosing clinical decisions.
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Improved life-supporting technology in the neonatal intensive care unit (NICU) has increased the survival rate of the most extremely preterm infants. However, those who survived are at high risk of developing long-term neurodevelopmental adverse outcomes. The implementation and continuation of intensive care may itself constitute the most challenging ethical dilemma faced by NICU professionals. This paper discusses the main ethical dilemmas in the rescue of the most extremely preterm infants and investigates currently feasible countermeasures to provide a reference for NICU professionals.
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Objective:To explore the expectations and values of patients with malocclusion on participation in shared decision-making of orthognathic surgical protocols, and to provide references for further development of clinical shared decision-making models.Methods:Based on the expected value theory and descriptive qualitative research methods, using purposive sampling, 13 patients with malocclusion in the Ninth People's Hospital of Shanghai Jiao tong University School of Medicine from May to August in 2021 were selected for semi-structured interviews. The interview data were sorted, classified and refined by traditional content analysis.Results:Two themes were extracted: patients' ability beliefs about their ability to participate in shared decision making for orthognathic surgery(decision support ability, psychological coping ability and environmental adaptability), and task values for shared decision making for orthognathic surgery(interest value, acquisition value).Conclusions:Low level of patients′ ability beliefs in shared decision-making, active physician guidance facilitates patient participation, but the depth of patient participation is influenced by factors such as information support, cultural climate, and physical space for shared decision making. It is suggested that the magnetic role of physicians should be actively played, the shared decision-making team should be strengthened, at the same time, hospital manager should enhance shared decision making propaganda to increase the acceptance and participation of patients in shared decision making so as to improve the quality of shared decision-making.
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Shared decision-making as a new model of healthcare culture is gaining more and more popularity and attention among healthcare participants. The paper successively described the concept of shared decision-making and the key points of the steps of applying shared decision-making in obstetrics, and analyzed the internal and external conditions and problems of applying shared decision-making in obstetrics wards with the help of SWOT analysis, in order to provide reference for further research and clinical practice related to shared decision-making in obstetrics wards in the future.
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Background: Living with breast cancer has been associated with increased risk for common mental health problems including depression and anxiety. However, the prevalence of comorbid anxiety and depression (CAD) and their associated factors have received little attention especially in low- and middle-income countries (LMICs) including Ghana. Objectives: This study examined the prevalence of CAD and its correlates in the context of breast cancer. Methods: Participants were 205 women receiving care for breast cancer at a Tertiary Hospital in Ghana. The Hospital Anxiety and Depression Scale (HADS) and socio-demographic questionnaires were administered to the participants. Results: Findings from the study showed that the prevalence of CAD, anxiety and depression was 29.4%, 48.5% and 37.3% respectively. CAD was significantly predicted by patients' English language reading ability, shared decision making and good doctor-patient relationship. Anxiety was significantly predicted by shared decision making and good doctor-patient relationship whereas depression was significantly predicted educational status, patients' English language reading ability, shared decision making and good doctor-patient relationship. Conclusion: The findings suggest relatively high prevalence of comorbid anxiety and depression which could negatively impact breast cancer treatment outcomes and therefore, improved interpersonal relationships between doctors and their patients as well as literacy skills are warranted