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1.
J Burn Care Res ; 45(1): 112-119, 2024 Jan 05.
Artículo en Inglés | MEDLINE | ID: mdl-37310702

RESUMEN

Cutaneous burn scars impact various aspects of life. Scar treatment is mainly evaluated on scar characteristics. Consensus is needed on which other outcomes to capture, ensuring they are relevant to patients, clinicians, and researchers. The aim of this study was to identify, discuss and analyze outcomes related to cutaneous burn scarring, incorporating the voice of patients and views of healthcare professionals. For this, a Delphi process consisting of two survey rounds and a consensus meeting was initiated. Burn scar-related outcomes were identified from an existing comprehensive list of 100 outcomes by an international panel of patients, healthcare professionals and researchers. Fifty-nine outcomes were identified from the Delphi process as related to scarring (≥60% votes). Outcomes less impactful in relation to scar outcomes included psychosocial issues, sense of normality, understanding of treatment, costs and systemic issues. To represent a holistic assessment of outcomes related to cutaneous burn scarring, this Delphi process established a battery of outcomes currently included in scar quality assessment tools, and an expanded set of less frequently considered outcomes. Future work in this area must include the patient voice from developing countries. This is essential to identify globally applicable outcomes related to scarring.


Asunto(s)
Quemaduras , Cicatriz , Humanos , Cicatriz/etiología , Cicatriz/terapia , Cicatriz/patología , Toma de Decisiones Conjunta , Calidad de Vida , Quemaduras/complicaciones , Quemaduras/terapia , Quemaduras/psicología , Personal de Salud
2.
Midwifery ; 126: 103828, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37717344

RESUMEN

PROBLEM: Implementation of woman-centred care in evidence-based maternity practice requires clinicians to be skilled in shared decision-making, yet there is limited training or research into such interventions. BACKGROUND: Shared decision-making enables women to make informed decisions in partnership with clinicians where there are varied clinical options in relation to indications for and timing of planned birth. AIM: We aimed to develop a shared decision-making training intervention and evaluate its feasibility and acceptability to midwives and obstetricians. METHODS: The intervention was co-designed by midwifery and medical clinician-researchers, and a consumer representative. Online training and demonstration videos were distributed to midwives and obstetricians in three Sydney hospitals, followed by two online workshops in 2021 and 2022 where participants practised shared decision-making in roleplaying scenarios tailored to timing of birth. Training was evaluated using post-workshop and post-training surveys and semi-structured qualitative interviews. FINDINGS: The training workshop format, duration and content were well received. Barriers to the uptake of shared decision-making were time, paternalistic practices and fear of repercussions of centring women in the decision-making process. DISCUSSION: The intervention enabled midwifery and medical colleagues to learn communication repertoires from each other in woman-centred discussions around timing of birth. Roleplay scenarios enabled participants to observe and provide feedback on their colleagues' shared decision-making practices, while providing a space for collective reflection on ways to promote, and mitigate barriers to, its implementation in practice. CONCLUSION: Shared decision-making training supports maternity clinicians in developing skills that implement woman-centred care in the timing of planned birth.


Asunto(s)
Servicios de Salud Materna , Partería , Obstetricia , Femenino , Humanos , Embarazo , Partería/métodos , Toma de Decisiones Conjunta , Práctica Clínica Basada en la Evidencia , Toma de Decisiones
3.
Eur J Cancer ; 192: 113276, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37657228

RESUMEN

BACKGROUND: Ductal carcinoma in situ (DCIS) can progress to invasive breast cancer (IBC), but most DCIS lesions remain indolent. However, guidelines recommend surgery, often supplemented by radiotherapy. This implies overtreatment of indolent DCIS. The non-randomised patient preference LORD-trial tests whether active surveillance (AS) for low-risk DCIS is safe, by giving women with low-risk DCIS a choice between AS and conventional treatment (CT). Here, we aim to describe how participants are distributed among both trial arms, identify their motives for their preference, and assess factors associated with their choice. METHODS: Data were extracted from baseline questionnaires. Descriptive statistics were used to assess the distribution and characteristics of participants; thematic analyses to extract self-reported reasons for the choice of trial arm, and multivariable logistic regression analyses to investigate associations between patient characteristics and chosen trial arm. RESULTS: Of 377 women included, 76% chose AS and 24% CT. Most frequently cited reasons for AS were "treatment is not (yet) necessary" (59%) and trust in the AS-plan (39%). Reasons for CT were cancer worry (51%) and perceived certainty (29%). Women opting for AS more often had lower educational levels (OR 0.45; 95% confidence interval [CI], 0.22-0.93) and more often reported experiencing shared decision making (OR 2.71; 95% CI, 1.37-5.37) than women choosing CT. CONCLUSION: The LORD-trial is the first to offer women with low-risk DCIS a choice between CT and AS. Most women opted for AS and reported high levels of trust in the safety of AS. Their preferences highlight the necessity to establish the safety of AS for low-risk DCIS.


Asunto(s)
Neoplasias de la Mama , Carcinoma Intraductal no Infiltrante , Femenino , Humanos , Carcinoma Intraductal no Infiltrante/terapia , Espera Vigilante , Neoplasias de la Mama/terapia , Toma de Decisiones Conjunta , Suplementos Dietéticos
4.
Patient Educ Couns ; 115: 107920, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37531789

RESUMEN

BACKGROUND: Finding Your Way is a culturally adapted shared decision making (SDM) resource for Aboriginal (First Nations) people of Australia. It integrates the Eight Ways of Aboriginal Learning (8 Ways) and was created by Aboriginal health workers and community members in New South Wales (NSW), Australia. OBJECTIVE: To explore the perceived acceptability, usability, and feasibility of Finding Your Way as a SDM resource for Aboriginal people making health and wellbeing decisions. METHODS: The web-based resources were disseminated using social media, professional networks, publications, and the 'Koori grapevine'. Thirteen 'champions' also promoted the resources. An online questionnaire was available on the website for three months. Framework analysis determined early indications of its acceptability, usability, and feasibility. Web and social media analytics were also analysed. Partnership with and leadership by Aboriginal people was integrated at all phases of the project. RESULTS: The main landing page was accessed 5219 times by 4259 users. 132 users completed the questionnaire. The non-linear and visual aspects of the resources 'speak to mob' and identified with Aboriginal culture. The inclusion of social and emotional well-being, and the holistic approach were well received by the small number of users who opted to provide feedback. They suggested that non-digital formats and guidance on the resources are required to support use in clinical practice. CONCLUSION: The 8 Ways enabled the development of a culturally safe SDM resource for Aboriginal people, which was well received by users who took the time to provide feedback after a brief dissemination process. Additional accessible formats, practice guides and training are required to support uptake in clinical practice. PRACTICE IMPLICATIONS: Finding Your Way could be used to help improve experiences, health literacy, decision making quality and outcomes of healthcare for Aboriginal Australians.


Asunto(s)
Toma de Decisiones Conjunta , Servicios de Salud del Indígena , Humanos , Australia , Aborigenas Australianos e Isleños del Estrecho de Torres , Estudios de Factibilidad , Aceptación de la Atención de Salud , Asistencia Sanitaria Culturalmente Competente , Determinantes Sociales de la Salud
5.
BMJ Open ; 13(7): e070159, 2023 07 05.
Artículo en Inglés | MEDLINE | ID: mdl-37407039

RESUMEN

INTRODUCTION: The Australian population presenting with surgical pathology is becoming older, frailer and more comorbid. Shared decision-making is rapidly becoming the gold standard of care for patients considering high-risk surgery to ensure that appropriate, value-based healthcare decisions are made. Positive benefits around patient perception of decision-making in the immediacy of the decision are described in the literature. However, short-term and long-term holistic patient-centred outcomes and cost implications for the health service require further examination to better understand the full impact of shared decision-making in this population. METHODS: We propose a novel multidisciplinary shared decision-making model of care in the perioperative period for patients considering high-risk surgery in the fields of general, vascular and head and neck surgery. We assess it in a two arm prospective randomised controlled trial. Patients are randomised to either 'standard' perioperative care, or to a multidisciplinary (surgeon, anaesthetist and end-of-life care nurse practitioner or social worker) shared decision-making consultation. The primary outcome is decisional conflict prior to any surgical procedure occurring. Secondary outcomes include the patient's treatment choice, how decisional conflict changes longitudinally over the subsequent year, patient-centred outcomes including life impact and quality of life metrics, as well as morbidity and mortality. Additionally, we will report on healthcare resource use including subsequent admissions or representations to a healthcare facility up to 1 year. ETHICS AND DISSEMINATION: This study has been approved by the Hunter New England Human Research Ethics Committee (2019/ETH13349). Study findings will be presented at local and national conferences and within scientific research journals. TRIAL REGISTRATION NUMBER: ACTRN12619001543178.


Asunto(s)
Calidad de Vida , Cirujanos , Humanos , Anciano , Estudios Prospectivos , Australia , Toma de Decisiones Conjunta , Ensayos Clínicos Controlados Aleatorios como Asunto
6.
Autism ; 27(8): 2407-2421, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37070240

RESUMEN

LAY ABSTRACT: Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child's physical health but not for their child's developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.


Asunto(s)
Trastorno del Espectro Autista , Terapias Complementarias , Toma de Decisiones Conjunta , Hispánicos o Latinos , Padres , Rol del Médico , Niño , Humanos , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/etnología , Trastorno del Espectro Autista/psicología , Trastorno del Espectro Autista/terapia , Disparidades en Atención de Salud , Hispánicos o Latinos/psicología , Padres/psicología , Pediatras/psicología , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Juicio , Miedo , Responsabilidad Parental/etnología , Responsabilidad Parental/psicología , Investigación Cualitativa , Terapias Complementarias/métodos , Terapias Complementarias/psicología , Relaciones Médico-Paciente
7.
Am Surg ; 89(5): 1347-1351, 2023 May.
Artículo en Inglés | MEDLINE | ID: mdl-36786501

RESUMEN

Investigating, respecting, and working with surgical patients' spiritualities is as critical a skill as the proficient technical performance of operations. When spirituality is ignored, sacred patient values remain undiscovered, authentic trust is hindered, and healthy shared decision-making processes suffer. These are instances when the other edge of the spiritual scalpel comes back to cut us as surgeons, but more importantly, upon withdrawal of spiritual understanding, it deeply injures our patients and their families. Spiritual screening, spiritual history taking, engaged, active listening, and big-picture prognostic truth-telling while promoting hope are critical skills for efficacious whole-person surgical care and the healing of our surgical patients' suffering-in all aspects of their humanity. These skills require surgeon introspection and vulnerability, however, as well as regular practice, and can be quite difficult; frequently leading to understandable discomfort, particularly when the surgeon does not share the patient's spiritual orientation or religious commitments. This literature-based essay addresses all of these issues, providing surgeons with a variety of new spiritual tools for their holistic armamentarium to promote healing, rather than further injury.


Asunto(s)
Espiritualidad , Cirujanos , Humanos , Toma de Decisiones Conjunta
8.
Midwifery ; 117: 103564, 2023 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36525895

RESUMEN

OBJECTIVE: To assess the effectiveness of using an innovative decision aid, MyBirthplace, to facilitate shared decision-making regarding place of birth. DESIGN: A quasi-experimental study comparing pre-test and post-test responses from participants who had access to the intervention. SETTING: A large urban hospital in the south of England. PARTICIPANTS: All pregnant women who accessed maternity care between April and December 2016. INTERVENTION: A decision aid (MyBirthplace) designed to provide information and support regarding place of birth. The digital tool (available in both an app and web-based version) was used to facilitate discuss between the women and her midwife at the booking visit. MEASUREMENTS: Women's stage of decision making as measured by the Stage of Decision Making Scale. A questionnaire was administered before and after using MyBirthplace at booking, and again at 28 weeks gestation. FINDINGS: Nearly half the women (42.1%) had already decided where they wanted to give birth before the booking appointment, but a third (34.3%) had not yet begun to think about their choices. The introduction of the decision aid during the booking visit was associated with a significant increase in the stage of decision making suggesting that women had greater certainty in their decision P< 0.0001 [SD 1.077]. Women who accessed MyBirthplace had lower decisional conflict after the booking appointment than those women that did not access the decision aid (35.5% compared with 22.0%) but this difference was not statistically significant. KEY CONCLUSIONS: Decision aids, as a standard part of practice, have the potential to ensure women are informed of their options and encourage shared decision making about place of birth. Women were more confident with their decision following the booking appointment and by 28 weeks; however, further research is needed to identify the role that the decision aid played in building this confidence. IMPLICATIONS FOR PRACTICE: The introduction of a decision aid, Mybirthplace, within the hospital impacted early discussions between the woman and the midwife and appeared to benefit women's decision making regarding place of birth. Further studies of midwives' use of innovative technologies and their implementation are required.


Asunto(s)
Servicios de Salud Materna , Partería , Embarazo , Femenino , Humanos , Toma de Decisiones , Parto , Toma de Decisiones Conjunta
9.
BMC Pregnancy Childbirth ; 22(1): 717, 2022 Sep 20.
Artículo en Inglés | MEDLINE | ID: mdl-36127645

RESUMEN

BACKGROUND: For quality-oriented evaluation of prenatal and obstetric care, it is important to systematically consider the perspective of the women receiving care in order to comprehensively assess and optimize quality in a woman-centered manner. Empathy and Shared Decision Making (SDM) are essential components of woman-centered midwifery care. The aim of the study was to analyze measurement invariance of the items of the Consultation and Relational Empathy (CARE) and Shared Decision Making-Questionnaire (SDM-Q-9) scales depending on the prenatal versus obstetric care setting. METHODS: One hundred fifty women retrospectively assessed aspects of woman-centered midwifery care in both prenatal and obstetric care setting. The birth of the child was a maximum of 12 months ago. A structural equation modelling approach was adopted to separate true effects from response shift (RS) effects depending on care setting. The latter were analyzed in terms of recalibration (changing women's internal measurement standards), Reprioritization (changing associations of items and construct) as well as Reconceptualization (redefining the target construct). RESULTS: A response shift model was identified for both assessments (pregnancy/birth: CFI = .96/.96; SRMR = .046/.051). At birth, both scales indicated lower quality of care compared with prenatal care (SDM-Q-9-M/CARE-8-M:|d| = 0.190/0.392). Although no reconceptualization is required for the items of both scales, RS effects are evident for individual items. Due to recalibration and reprioritization effects, the true differences in the items are partly underestimated (SDM-Q-9-M/CARE-8-M: 3/2 items) or overestimated (4/2 items). CONCLUSION: The structure of the constructs SDM and Empathy, indicating woman-centered midwifery care, are moderated by the care settings. To validly assess midwives' empathy and shared decision making from women's perspective, setting-dependent response shift effects have to be considered. The proven item-specific response effects contribute to a better understanding of construct characteristics in woman-centered care by midwives during pregnancy and childbirth.


Asunto(s)
Toma de Decisiones Conjunta , Partería , Niño , Toma de Decisiones , Empatía , Femenino , Humanos , Recién Nacido , Participación del Paciente , Embarazo , Estudios Retrospectivos , Vitaminas
10.
BMC Pregnancy Childbirth ; 22(1): 551, 2022 Jul 08.
Artículo en Inglés | MEDLINE | ID: mdl-35804308

RESUMEN

BACKGROUND: Health care providers have an important role to share evidence based information and empower patients to make informed choices. Previous studies indicate that shared decision making in pregnancy and childbirth may have an important impact on a woman's birth experience. In Flemish social media, a large number of women expressed their concern about their birth experience, where they felt loss of control and limited possibilities to make their own choices. The aim of this study is to explore autonomy and shared decision making in the Flemish population. METHODS: This is a cross-sectional, non-interventional study to explore the birth experience of Flemish women. A self-assembled questionnaire was used to collect data, including the Pregnancy and Childbirth Questionnaire (PCQ), the Labor Agentry Scale (LAS), the Mothers Autonomy Decision Making Scale (MADM), the 9-item Shared Decision Making Questionnaire (SDM-Q9) and four questions on preparation for childbirth. Women who gave birth two to 12 months ago were recruited by means of social media in the Flemish area (Northern part of Belgium). Linear mixed-effect modelling with backwards variable selection was applied to examine relations with autonomy in decision making. RESULTS: In total, 1029 mothers participated in this study of which 617 filled out the survey completely. In general, mothers experienced moderate autonomy in decision-making, both with an obstetrician and with a midwife with an average on the MADM score of respectively 18.5 (± 7.2) and 29.4 (±10.4) out of 42. The linear mixed-effects model showed a relationship between autonomy in decision-making (MADM) for the type of healthcare provider (p < 0.001), the level of self-control during labour and birth (LAS) (p = 0.003), the level of perceived quality of care (PCQ) (p < 0.001), having epidural analgesia during childbirth (p = 0.026) and feeling to have received sufficient information about the normal course of childbirth (p < 0.001). CONCLUSIONS: Childbearing women in Flanders experience moderate levels of autonomy in decision- making with their health care providers, where lower autonomy was observed for obstetricians compared to midwives. Future research should focus more on why differences occur between obstetrics and midwives in terms of autonomy and shared decision-making as perceived by the mother.


Asunto(s)
Toma de Decisiones Conjunta , Partería , Bélgica , Estudios de Cohortes , Estudios Transversales , Toma de Decisiones , Femenino , Humanos , Parto , Embarazo
11.
AMA J Ethics ; 24(5): E368-375, 2022 05 01.
Artículo en Inglés | MEDLINE | ID: mdl-35575567

RESUMEN

Many patients use dietary supplements but do not inform their clinicians. Some allopathic clinicians' conscious and unconscious cognitive and emotional biases against complementary and alternative medicine can affect whether patients disclose details about dietary supplement use, the quality of communication during clinical encounters, and the information clinicians draw upon to make decisions and recommendations. This article describes 6 cognitive biases that can influence patient-clinician communication and shared decision making about dietary supplements and suggests 6 ways to mitigate biases' negative effects on patient-clinician relationships.


Asunto(s)
Comunicación , Toma de Decisiones Conjunta , Sesgo , Cognición , Suplementos Dietéticos , Humanos
12.
Curr Probl Cancer ; 46(3): 100860, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35436642

RESUMEN

Patient engagement in medical decision-making improves patient related outcomes through compliance and patient satisfaction. The Inova Schar Cancer Institute has a weekly molecular tumor board (MTB) to match comprehensive genomic sequencing results with targeted therapies for patients. Primary oncologists extended MTB invitations to their patients. Ultimately, 20 of the 139 patients attended and completed pre- and post MTB surveys. There was a statistically significant change from the pre- to post- survey for the question "I am satisfied with how well informed I am about targeted therapy" with P = 0.016. Patients who attended MTB reported higher levels of satisfaction with their knowledge of targeted therapy after MTB as compared to before. A more holistic method of studying this practice would include sampling a larger patient population and a formal evaluation of the physicians' experience with patients attending.


Asunto(s)
Toma de Decisiones Conjunta , Neoplasias , Toma de Decisiones Clínicas , Humanos , Neoplasias/genética , Neoplasias/terapia , Medicina de Precisión/métodos , Encuestas y Cuestionarios
13.
Nurs Philos ; 23(3): e12390, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-35416380

RESUMEN

Shared decision making has become the standard of care, yet there remains no consensus about how it should be conducted. Most accounts are concerned with threats to patient autonomy, and they address the dangers of a power imbalance by foregrounding the patient as a person whose complex preferences it is the practitioner's task to support. Other corrective models fear that this level of mutuality risks abdicating the practitioner's responsibilities as an expert, and they address that concern by recovering a nuanced but genuinely directive clinical role. Cribb and Entwistle helpfully categorize models of shared decision making as 'narrower' and 'broader' and praise the latter's 'open-ended and fully dialogical ways of relating'. However, they stop short of providing a philosophical account of how that dialogue works. In this paper, a nurse-midwife and a philosopher collaborate to argue that the Socratic model of dialogue offers a solution to the practitioner-patient dilemma. In the Theaetetus, Socrates compares dialogical reasoning to 'midwifery with all its standard features'. By means of a three-way analogy, elements of midwifery practice are used to illuminate features of Socrates' claim that his dialogue is like midwifery; those features are then translated into an approach to shared decision making as the 'midwifery of good thinking' which both midwives and physicians would do well to adopt. A key concept that emerges is the need for practitioners to make a risk-confidence assessment of the particular content of any decision to appropriately modulate their role in the practice of shared decision making.


Asunto(s)
Partería , Razonamiento Clínico , Toma de Decisiones , Toma de Decisiones Conjunta , Femenino , Humanos , Atención Dirigida al Paciente , Embarazo
14.
Nurs Health Sci ; 24(1): 54-64, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35174947

RESUMEN

This study explored clinician perceptions of women's participation in decision-making about antiemetic treatments during pregnancy, and the suitability of the five Choosing Wisely questions to increase women's involvement. The qualitative interpretive descriptive design used semi-structured interviews to capture data. Participants were six obstetricians and six midwives experienced in providing care for pregnant women seeking support for nausea and vomiting at a single private, obstetrician-led maternity health service in Australia. Thematic analysis revealed four themes that captured clinician perspectives about women's participation in decision-making about antiemetic treatments: (i) information gathering; (ii) developing an understanding; (iii) using knowledge; and (iv) making decisions. Clinician attitudes and perspectives, as well as their self-reported styles of communication and negotiation, influenced how they engaged with women during decision-making. While unfamiliar with the five Choosing Wisely questions, almost all participants considered them potentially useful, but for other clinicians. Strategies to actively involve women in decision-making about antiemetics were inconsistently used. The five Choosing Wisely questions may provide a useful tool for clinicians, but further research is needed to better understand women's perspectives and clinician-related barriers to shared decision-making.


Asunto(s)
Antieméticos , Partería , Antieméticos/uso terapéutico , Toma de Decisiones , Toma de Decisiones Conjunta , Femenino , Humanos , Embarazo , Mujeres Embarazadas , Investigación Cualitativa
15.
J Matern Fetal Neonatal Med ; 35(14): 2723-2730, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-32727235

RESUMEN

OBJECTIVE: To explore parental perceptions of written handbooks provided to them during antenatal counseling for anticipated extremely preterm birth. STUDY DESIGN: This study involved a prospective convenience sample of parents anticipating delivery between 22 weeks + 0 days and 25 weeks + 6 days gestation. The antenatal counseling involved a shared decision-making process. In-person interviews were conducted using a semi-structured interview guide to gather feedback about new parent handbooks developed to support decision making. The questions during the semi-structured interview targeted seven main themes: overall impression, timing, graphs/tables, formatting, imagery, ease of use and understanding, and content. The interviews followed an antenatal consultation and provision of the appropriate handbook(s) by a neonatologist. Interviews were transcribed verbatim and thematic analysis of the data was completed. RESULTS: Eleven parents were interviewed. All parents described the provision of the handbook(s) following the consultation with a neonatologist as the ideal time. All parents considered a visual representation of the data to be invaluable. Parents considered the handbooks easy to understand and straightforward. Some parents were satisfied with simple information, which helped them feel less overwhelmed; others felt the depth of information was insufficient. Parents preferred a paper copy to electronic. Reactions to the photo of an infant receiving intensive care varied; some parents felt frightened, others felt comforted. CONCLUSION: Overall, parents positively evaluated the handbooks, supporting their utility for parents anticipating extremely preterm birth. Concrete suggestions for improvement were made; the handbooks will be modified accordingly. Parents at other perinatal centers may benefit from receiving such handbooks.


Asunto(s)
Nacimiento Prematuro , Toma de Decisiones , Toma de Decisiones Conjunta , Femenino , Humanos , Recien Nacido Extremadamente Prematuro , Recién Nacido , Padres/psicología , Embarazo , Nacimiento Prematuro/psicología , Estudios Prospectivos
16.
Ann Emerg Med ; 79(1): 48-57, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34353645

RESUMEN

Anemia is a commonly encountered condition in emergency medicine; transfusion of packed red blood cells is commonly performed for anemic patients in the emergency department (ED), but some patients are unable to accept transfusion of blood products due to medical or religious concerns. The unique, acute, and time-sensitive nature of emergency medicine practice requires that physicians maintain an enhanced awareness of bloodless medicine treatment modalities. Identification of bloodless medicine patient preferences in the ED can help guide physicians in the recommendation of acceptable methods of treating anemia in this patient population. A focus on early hemostasis and resuscitation, instead of attempts to convince the patient to accept blood transfusion, can be lifesaving in patients with acute bleeding. Treatment strategies including the use of methods to reduce unnecessary blood loss, enhance red blood cell production, and increase the oxygen-carrying capacity of blood should also be considered early in patient presentation. Timely involvement of the Hospital Liaison Committee can help facilitate successful interpersonal communication and shared decisionmaking between emergency physicians and bloodless medicine patients. By embracing an understanding of bloodless medicine patient needs as well as available treatment strategies, ED physicians can contribute to optimal overall outcomes for anemic bloodless medicine patients.


Asunto(s)
Anemia/terapia , Servicio de Urgencia en Hospital , Técnicas Hemostáticas , Anemia/sangre , Sustitutos Sanguíneos/uso terapéutico , Formularios de Consentimiento , Toma de Decisiones Conjunta , Suplementos Dietéticos , Eritrocitos/metabolismo , Hemostáticos/uso terapéutico , Humanos , Hierro/uso terapéutico , Prioridad del Paciente
17.
Nurs Health Sci ; 24(1): 17-33, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34752013

RESUMEN

Midwives significantly support women with unplanned pregnancies-promoting a shared perspective on the decision-making process. This study aimed to develop a scale to support midwives to self-assess their practice of this vital role. Following the derivation of scale items and pilot testing, the final version of the scale was administered to 531 midwives to establish internal consistency and construct criterion-related validity. Through exploratory factor analysis, 35 items with a five-factor structure were retained to form the midwifery practice self-assessment scale to promote shared decision-making in women with unplanned pregnancies. These factors illustrate midwives' general aptitude and competencies in understanding environmental factors, collaborating with significant others and the interprofessional group, forming rapport and problem sharing, focusing on consultation content, and promoting autonomous decision-making. There were high and low scores on the scales after attendance of the workshops to support the decision-making of women with unplanned pregnancies. The reliability analysis showed acceptable Cronbach's alpha values for the five factors, from 0.85 to 0.87. The scale was demonstrated to be a reliable and valid measure that would help improve the quality of midwives' practice.


Asunto(s)
Partería , Estudios Transversales , Toma de Decisiones Conjunta , Femenino , Humanos , Embarazo , Embarazo no Planeado , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
18.
Implement Sci ; 16(1): 106, 2021 12 29.
Artículo en Inglés | MEDLINE | ID: mdl-34965881

RESUMEN

BACKGROUND: Shared decision-making (SDM) is preferred by many patients in cancer care. However, despite scientific evidence and promotion by health policy makers, SDM implementation in routine health care lags behind. This study aimed to evaluate an empirically and theoretically grounded implementation program for SDM in cancer care. METHODS: In a stepped wedge design, three departments of a comprehensive cancer center sequentially received the implementation program in a randomized order. It included six components: training for health care professionals (HCPs), individual coaching for physicians, patient activation intervention, patient information material/decision aids, revision of quality management documents, and reflection on multidisciplinary team meetings (MDTMs). Outcome evaluation comprised four measurement waves. The primary endpoint was patient-reported SDM uptake using the 9-item Shared Decision Making Questionnaire. Several secondary implementation outcomes were assessed. A mixed-methods process evaluation was conducted to evaluate reach and fidelity. Data were analyzed using mixed linear models, qualitative content analysis, and descriptive statistics. RESULTS: A total of 2,128 patient questionnaires, 559 questionnaires from 408 HCPs, 132 audio recordings of clinical encounters, and 842 case discussions from 66 MDTMs were evaluated. There was no statistically significant improvement in the primary endpoint SDM uptake. Patients in the intervention condition were more likely to experience shared or patient-lead decision-making than in the control condition (d=0.24). HCPs in the intervention condition reported more knowledge about SDM than in the control condition (d = 0.50). In MDTMs the quality of psycho-social information was lower in the intervention than in the control condition (d = - 0.48). Further secondary outcomes did not differ statistically significantly between conditions. All components were implemented in all departments, but reach was limited (e.g., training of 44% of eligible HCPs) and several adaptations occurred (e.g., reduced dose of coaching). CONCLUSIONS: The process evaluation provides possible explanations for the lack of statistically significant effects in the primary and most of the secondary outcomes. Low reach and adaptations, particularly in dose, may explain the results. Other or more intensive approaches are needed for successful department-wide implementation of SDM in routine cancer care. Further research is needed to understand factors influencing implementation of SDM in cancer care. TRIAL REGISTRATION: clinicaltrials.gov, NCT03393351 , registered 8 January 2018.


Asunto(s)
Neoplasias , Médicos , Toma de Decisiones , Toma de Decisiones Conjunta , Personal de Salud/educación , Humanos , Neoplasias/terapia , Participación del Paciente
19.
Sci Eng Ethics ; 27(6): 75, 2021 12 14.
Artículo en Inglés | MEDLINE | ID: mdl-34907470

RESUMEN

In this article we summarise some previously described proposals for ethical governance of autonomous vehicles ('smart cars'), critique them, and offer an alternative solution. Rather than programming cars to react to crash situations in the same way as humans, having humans program pre-set responses for a wide range of different potential scenarios, or applying particular ethical theories, we suggest that decisions should be made jointly between humans and cars. Given that humans lack the requisite processing capacity, and computers lack the necessary ethical capacity, the medical paradigm of advance care planning can be retooled for this new context. Advance car-crash planning provides a way to combine humans' ethical preferences with the advanced data processing capacities of computers to enable shared decision making in collision situations.


Asunto(s)
Automóviles , Toma de Decisiones Conjunta , Accidentes de Tránsito , Vehículos Autónomos , Toma de Decisiones , Teoría Ética , Humanos
20.
Circ Arrhythm Electrophysiol ; 14(12): e007958, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34865518

RESUMEN

Shared decision making (SDM) has been advocated to improve patient care, patient decision acceptance, patient-provider communication, patient motivation, adherence, and patient reported outcomes. Documentation of SDM is endorsed in several society guidelines and is a condition of reimbursement for selected cardiovascular and cardiac arrhythmia procedures. However, many clinicians argue that SDM already occurs with clinical encounter discussions or the process of obtaining informed consent and note the additional imposed workload of using and documenting decision aids without validated tools or evidence that they improve clinical outcomes. In reality, SDM is a process and can be done without decision tools, although the process may be variable. Also, SDM advocates counter that the low-risk process of SDM need not be held to the high bar of demonstrating clinical benefit and that increasing the quality of decision making should be sufficient. Our review leverages a multidisciplinary group of experts in cardiology, cardiac electrophysiology, epidemiology, and SDM, as well as a patient advocate. Our goal is to examine and assess SDM methodology, tools, and available evidence on outcomes in patients with heart rhythm disorders to help determine the value of SDM, assess its possible impact on electrophysiological procedures and cardiac arrhythmia management, better inform regulatory requirements, and identify gaps in knowledge and future needs.


Asunto(s)
Arritmias Cardíacas/terapia , Toma de Decisiones Clínicas , Toma de Decisiones Conjunta , Técnicas de Apoyo para la Decisión , Técnicas Electrofisiológicas Cardíacas , Arritmias Cardíacas/diagnóstico , Arritmias Cardíacas/fisiopatología , Medicina Basada en la Evidencia , Humanos , Participación del Paciente , Seguridad del Paciente , Valor Predictivo de las Pruebas , Pronóstico , Medición de Riesgo , Factores de Riesgo
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