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2.
Rev. cienc. salud (Bogotá) ; 22(2): 1-12, 20240531.
Artigo em Espanhol | LILACS | ID: biblio-1555032

RESUMO

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


Assuntos
Humanos , Chile , Doença
3.
J Hand Surg Am ; 49(8): 789-793, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38639682

RESUMO

The importance of informed consent and the value of shared decision-making in hand surgery are well-established and particularly critical in the setting of digit amputation when considering replantation. Informed consent requires an understanding of not only the immediate and long-term risks and benefits of surgery, as well as the risks and alternatives involved, but also the capacity of the patient to make a medical decision. However, patients who have acutely sustained a disfiguring trauma are often in distress and may not fully process the consent discussion. Digit replantation is an "elective emergency"-the decision must be made immediately but is not lifesaving-which poses a difficult dilemma: are surgeons acting in patients' best interests by pursuing replantation if we engage those patients in informed consent discussions when they may not have capacity? This article explores the relevant bioethical principles associated with digit replantation, summarizes updated literature regarding informed consent and shared decision-making, and provides recommendations for patient education materials to standardize informed consent discussions for surgeons approaching patients at this unique intersection of considering revision amputation versus replantation.


Assuntos
Amputação Traumática , Tomada de Decisão Compartilhada , Traumatismos dos Dedos , Consentimento Livre e Esclarecido , Reimplante , Humanos , Reimplante/ética , Consentimento Livre e Esclarecido/ética , Traumatismos dos Dedos/cirurgia , Amputação Traumática/cirurgia
4.
Medicina (Kaunas) ; 60(4)2024 Mar 31.
Artigo em Inglês | MEDLINE | ID: mdl-38674230

RESUMO

Background and Objectives: Little is known about patients' and caregivers' experiences with atopic dermatitis (AD) in Argentina, so a survey was administered to learn more. Materials and Methods: A 53-item anonymous survey was administered in Spanish to adult AD patients (n = 334) and caregivers (n = 339) of pediatric AD patients in Argentina (total n = 673). Demographics, healthcare provider information, financial burden, disease severity, disease burden, level of disease-specific education, and experience with shared physician/patient decision making were collected. Linear and logistic regression models were used for statistical comparisons. Results: Survey respondents were overwhelmingly female (90.8%), as was the overall patient population (72.8%). Patients were seen mostly by healthcare specialists (66.8% dermatologists, 13.5% pediatricians, 7.7% allergists, and 7.2% general practitioners). Only 2.8% of respondents reported no symptoms, while 33.3%, 52.4%, and 11.5% reported mild, moderate, and severe AD disease, respectively. Anxiety/depression and pain/discomfort were the most impactful on respondents' quality of life. Caregivers of children with moderate to severe AD and adult patients with severe AD reported a significant financial burden, including using savings or not purchasing food or other essentials to afford medical care. Few people reported receiving disease-specific education or having their own treatment priorities taken into consideration. For adult patients, receiving disease education and being asked about treatment priorities were associated with higher treatment satisfaction and AD control. Discussion: Mental health, pain/discomfort, and financial worries are the most important burdens for adult AD patients and caregivers of children with AD in Argentina. We recommend prioritizing disease-specific education and shared decision making to improve AD care in Argentina.


Assuntos
Cuidadores , Efeitos Psicossociais da Doença , Dermatite Atópica , Humanos , Feminino , Dermatite Atópica/psicologia , Dermatite Atópica/terapia , Argentina , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Masculino , Adulto , Inquéritos e Questionários , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Adolescente , Criança , Índice de Gravidade de Doença
6.
Palliat Med Rep ; 5(1): 86-93, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38415076

RESUMO

Context: The COVID-19 pandemic presented unique challenges for health care systems. Overcrowded units, extreme illness severity, uncertain prognoses, and mistrust in providers resulted in a "pressure cooker" where traditional communication strategies were often insufficient. Objectives: Building on well-studied traditional communication interventions, neurobiology principles were used to create a novel communication strategy designed in the COVID-ICU to respond to the unique communication needs of patients within the context of a high mistrust setting. Methods: The hierarchy of communication needs recognizes three specific levels of communication that are essential within high-emotion and low-trust settings. The first level is to establish trust. The second level is to resonate with patients' emotions, helping to reduce arousal and improve empathy. The third level includes the more traditional content of disclosing prognostic information and shared decision-making. When facing communication challenges, clinicians are taught to move back a level and reattune to emotions and/or reestablish trust. Discussion: The COVID pandemic revealed the shortcomings of a primarily cognitive communication style. The hierarchy of communication needs emphasizes trust building, and emotional resonance as prerequisites of effective cognitive discussions, resulting in more effective clinician-patient communication that more fully incorporates cultural humility and better meets the needs of diverse patient populations. Additional research is needed to further develop this strategy and evaluate its impact on patient experience and outcomes.

7.
World J Urol ; 41(12): 3807-3815, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37924335

RESUMO

INTRODUCTION: Shared decision making (SDM) in surgical specialties was demonstrated to diminish decisional regret, decisional anxiety and decisional conflict. Urolithiasis guidelines do not explicit patient preference to choose treatment. The aim of this review article was to perform a systematic evaluation of published evidence regarding SDM in urinary stone treatment. METHODS: A systematic review in accordance PRISMA checklist was conducted using the MEDLINE (PubMed) database. Inclusion criteria were studies that evaluated stone treatment preferences. Reviews, editorials, case reports and video abstracts were excluded. ROBUST checklist was used to assess quality of the studies. RESULTS: 188 articles were obtained. After applying the predefined selection criteria, seven articles were included for final analysis. Six out of seven studies were questionnaires that propose clinical scenarios and treatment alternatives. The last study was a patient preference trial. A general trend among included studies showed a patient preference towards the least invasive option (SWL over URS). The main reasons to choose one treatment over the other were stone-free rates, risk of complications and invasiveness. DISCUSSION: This review provides an overview of the patients' preferences towards stone treatment in small- and medium-sized stones. There was a clear preference towards the least invasive management strategy. The main reason was less invasiveness. This is opposed to the global trends of performing more ureteroscopies and less SWL. Physicians played a pivotal role in counselling patients. SDM should be encouraged and improved. The main limitation of this study is the characteristics of the included studies.


Assuntos
Litotripsia , Cálculos Urinários , Urolitíase , Humanos , Preferência do Paciente , Urolitíase/terapia , Cálculos Urinários/terapia , Ureteroscopia
8.
Rev. APS (Online) ; 26(Único): e262337128, 22/11/2023.
Artigo em Português | LILACS, BDENF - Enfermagem | ID: biblio-1567075

RESUMO

O rastreamento mamográfico destina-se a mulheres assintomáticas e é essencial informá-las sobre os seus benefícios e riscos, dentre os quais a exposição à radiação ionizante. O objetivo desse artigo é analisar como a informação sobre o risco da radiação no rastreamento mamográfico é apresentada em materiais de comunicação em saúde para as mulheres. Foi realizada uma análise documental de materiais informativos de sites governamentais e de repositório de ferramentas de apoio à decisão. Foram avaliados 11 sites governamentais, 128 endereços eletrônicos, 100 imagens e 12 ferramentas de apoio à decisão e selecionados 14 materiais para análise. Observou-se pouca informação sobre os riscos da exposição à radiação e tendência a ressaltar os benefícios do rastreamento. A forma de apresentar o risco foi variada e poucos o quantificam. Reconhece-se a dificuldade implícita a essa temática e a importância de se considerar o letramento em cada contexto. Contudo, é preciso ampliar a comunicação com a mulher sobre o rastreamento do câncer de mama, na atenção primária à saúde, valorizando a tomada de decisão compartilhada com o profissional de saúde como princípio ético a ser assegurado.


Mammographic screening is aimed at asymptomatic women and it is essential to inform them about its benefits and risks, including exposure to ionizing radiation. The purpose of this article is to analyze how information on radiation risk in mammography screening is presented in health communication materials for women. A documentary analysis on materials from government websites and from a decision aids repository was carried out. A total of 11 governmental websites, 128 electronic addresses, 100 images and 12 decision support tools were evaluated and 14 materials were selected for analysis. There was little information on risks of radiation exposure and a tendency to emphasize the benefits of screening. The way of presenting the risk was varied and few quantified it. The difficulty implicit in this theme and the importance of considering literacy in each context are recognized. However, it is necessary to increase communication with women about breast cancer screening, in primary health care, valuing shared decision-making with the health professional as an ethical principle to be ensured.

9.
Cancer Med ; 12(14): 15612-15627, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37317676

RESUMO

BACKGROUND: Patients' lack of knowledge about their own disease may function as a barrier to shared decision-making and well-being. This study aimed to evaluate the impact of written educational materials on breast cancer patients. METHODS: This multicenter, parallel, unblinded, randomized trial included Latin American women aged ≥18 years with a recent breast cancer diagnosis yet to start systemic therapy. Participants underwent randomization in a 1:1 ratio to receive a customizable or standard educational brochure. The primary objective was accurate identification of molecular subtype. Secondary objectives included identification of clinical stage, treatment options, participation in decision-making, perceived quality of information received, and illness uncertainty. Follow-up occurred at 7-21 and 30-51 days post-randomization. CLINICALTRIALS: gov identifier: NCT05798312. RESULTS: One hundred sixty-five breast cancer patients with a median age of 53 years and 61 days from diagnosis were included (customizable: 82; standard: 83). At first available assessment, 52%, 48%, and 30% identified their molecular subtype, disease stage, and guideline-endorsed systemic treatment strategy, respectively. Accurate molecular subtype and stage identification were similar between groups. Per multivariate analysis, customizable brochure recipients were more likely to identify their guideline-recommended treatment modalities (OR: 4.20,p = 0.001). There were no differences between groups in the perceived quality of information received or illness uncertainty. Customizable brochure recipients reported increased participation in decision-making (p = 0.042). CONCLUSIONS: Over one third of recently diagnosed breast cancer patients are incognizant of their disease characteristics and treatment options. This study demonstrates a need to improve patient education and shows that customizable educational materials increase patients' understanding of recommended systemic therapies according to individual breast cancer characteristics.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Adolescente , Adulto , Pessoa de Meia-Idade , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Folhetos , Tomada de Decisão Compartilhada
10.
J Med Access ; 7: 27550834231177503, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37323851

RESUMO

Rare diseases are characterized by a wide diversity of signs and symptoms and vary not only from disease to disease but also from person to person, and living with a disease leads patients to peculiar experiences, without limits of time and space, as they extend to various environments and relationships of their lives. Therefore, the objective of this study is the theoretical interaction between value co-creation (VC) and the stakeholder theory (ST) with the shared decision-making (SDM) health care theory, to enable the analysis of the relationships between patients and their stakeholders in the co-creation of value for decision-making focused on the patient's quality of life. It is configured as a multi-paradigmatic proposal by enabling the analysis of multiple perspectives of different stakeholders in health care. Thus, co-created decision-making (CDM) emerges with emphasis on interactivity of the relationships. As previous studies have already highlighted the importance of holistic care, seeing the patient as a whole and not just the body, studies with CDM will be beneficial for analyses that go beyond the clinical office and doctor-patient relationships, extending to all environments and interactions that add value to the patient's treatment. It was concluded that the essence of this new theory proposed here is neither in patient-centered care nor in patient self-care, but in co-created relationships with and between stakeholders, including non-health care environments that are important to the patient, such as relationships with friends, family, other patients with the same disease, social media, public policies, and the practice of pleasurable activities.

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