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1.
Reprod Biomed Online ; 46(6): 1017-1025, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37062637

RESUMEN

RESEARCH QUESTION: What are the considerations of girls with Turner syndrome and their parents to opt for or against ovarian tissue cryopreservation (OTC)? DESIGN: Semi-structured in-depth interviews were conducted with girls with Turner syndrome and their parents until data saturation was reached. Participants were recruited through purposive sampling. Data were analysed using a thematic analysis approach. RESULTS: Thirteen parents and five girls who opted for OTC, and seven parents and three girls who declined OTC, were interviewed. Parents and girls mentioned that OTC offered hope, an opportunity to have genetic offspring and clarity about their current fertility status. Most participants were not afraid of the risks of surgery and trusted healthcare providers with this procedure. In contrast, families had to deal with uncertainties, owing to the lack of information on the success rate and long-term consequences of OTC in this group. Families indicated that they had to go through an important decision-making process in a short period of time, because of the limited number of participants in the OTC study. CONCLUSION: A new opportunity and hope for future fertility were considerations for opting for OTC. However, OTC also came with uncertainties owing to the experimental nature of this procedure in girls with Turner syndrome. Healthcare providers could share these experiences with girls with Turner syndrome and their parents to improve fertility-preservation counselling in this group.


Asunto(s)
Preservación de la Fertilidad , Síndrome de Turner , Femenino , Humanos , Preservación de la Fertilidad/métodos , Criopreservación/métodos , Fertilidad , Padres
2.
J Genet Couns ; 32(2): 387-396, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36366912

RESUMEN

Unsolicited findings (UFs) from diagnostic genetic testing are a subject of debate. The emerging consensus is that some UFs from genetic testing should be disclosed, but recommendations on UF disclosure generally leave room for variation in practice. This study aimed to explore clinical geneticists' views on and experiences with UFs during pretest counseling and UF disclosure. We interviewed 20 certified clinical genetics medical specialists and clinical genetics residents, working in 7 Dutch genetic centers. Participants indicated that discussing the probability of detecting UFs is an integral part of pretest counseling and informed consent. However, they expressed doubts about the degree to which this discussion should occur and about what information they should share with patients. They argued that the contents of their counseling should depend on the individual patient's capacity to understand information. These results endorse the importance of tailored pretest counseling alongside informed consent for optimal genetic consultations. While "medical actionability" is broadly accepted as an important criterion for the disclosure of UFs, participants experienced substantial uncertainty regarding this concept. This study underscores the need for further demarcation of what exactly constitutes medical actionability. Installation of an expert panel to help healthcare professionals decide what variants to disclose will support them when facing the dilemmas presented by UFs.


Asunto(s)
Revelación , Pruebas Genéticas , Humanos , Consentimiento Informado , Asesoramiento Genético/psicología , Secuenciación de Nucleótidos de Alto Rendimiento
3.
J Perinat Med ; 51(9): 1229-1238, 2023 Nov 27.
Artículo en Inglés | MEDLINE | ID: mdl-37561765

RESUMEN

OBJECTIVES: Congenital diaphragmatic hernia (CDH) is a congenital malformation in which the diaphragm and lungs are underdeveloped, leading to cardiorespiratory and other problems. This study aimed to explore professionals' views regarding prenatal counselling in CDH. METHODS: A qualitative study was performed among healthcare professionals involved in the care of CDH patients in Radboud university medical center Amalia Children's Hospital. Semi-structured interviews were conducted until saturation was achieved. Transcripts were qualitatively analysed to gain insight into professionals' views regarding counselling. RESULTS: Eighteen professionals with various backgrounds were included. The professionals agreed that the first counselling session should be soon after diagnosis and additional sessions should be offered. Concerning counselling content, participants considered explanation of the diagnosis, prognosis, short- and long-term consequences, treatment options and practical aspects important. As for decision-making about possible termination of pregnancy, all professionals emphasised the importance of the parental role, but the preferred parental involvement varied. Regarding practical aspects, preferred counsellors were a neonatologist, obstetrician, paediatric surgeon and/or medical social worker. Participants emphasised that the counselling should be adjusted to parents' needs. CONCLUSIONS: This study gained insight into professionals' views regarding the timeline, content, decision-making process, and practical aspects of prenatal counselling in CDH.


Asunto(s)
Hernias Diafragmáticas Congénitas , Embarazo , Niño , Femenino , Humanos , Hernias Diafragmáticas Congénitas/terapia , Hernias Diafragmáticas Congénitas/cirugía , Consejo , Investigación Cualitativa , Pronóstico , Personal de Salud , Diagnóstico Prenatal
4.
J Antimicrob Chemother ; 77(8): 2105-2119, 2022 07 28.
Artículo en Inglés | MEDLINE | ID: mdl-35612930

RESUMEN

BACKGROUND: In daily hospital practice, antibiotic therapy is commonly prescribed for longer than recommended in guidelines. Understanding the key drivers of prescribing behaviour is crucial to generate meaningful interventions to bridge this evidence-to-practice gap. OBJECTIVES: To identify behavioural determinants that might prevent or enable improvements in duration of antibiotic therapy in daily practice. METHODS: We systematically searched PubMed, Embase, PsycINFO and Web of Science for relevant studies that were published between January 2000 and August 2021. All qualitative, quantitative and mixed-method studies in adults in a hospital setting that reported determinants of antibiotic therapy duration were included. RESULTS: Twenty-two papers were included in this review. A first set of studies provided 82 behavioural determinants that shape how health professionals make decisions about duration; most of these were related to individual health professionals' knowledge, skills and cognitions, and to professionals' interactions. A second set of studies provided 17 determinants that point to differences in duration regarding various pathogens, diseases, or patient, professional or hospital department characteristics, but do not explain why or how these differences occur. CONCLUSIONS: Limited literature is available describing a wide range of determinants that influence duration of antibiotic therapy in daily practice. This review provides a stepping stone for the development of stewardship interventions to optimize antibiotic therapy duration, but more research is warranted. Stewardship teams must develop complex improvement interventions to address the wide variety of behavioural determinants, adapted to the specific pathogen, disease, patient, professional and/or hospital department involved.


Asunto(s)
Antibacterianos , Hospitales , Antibacterianos/uso terapéutico , Personal de Salud , Humanos
5.
Am J Obstet Gynecol ; 226(2): 234.e1-234.e14, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34536392

RESUMEN

BACKGROUND: The discovery of the fallopian tube epithelium as the origin of high-grade serous ovarian cancer has brought a new option for ovarian cancer prevention. The fallopian tubes have no known function after completion of childbearing and can be removed to reduce the lifetime risk of ovarian cancer. Although the lifetime risk in the general population does not justify preventive surgery in itself, salpingectomy can be performed during abdominal surgery for other indications, also known as an opportunistic salpingectomy. The popularity of opportunistic salpingectomy is increasing worldwide; however, the variation between gynecologists and hospitals in their advice on opportunistic salpingectomy occurs because of the remaining uncertainty of evidence. Therefore, whether a woman can make her own decision depends on the hospital or gynecologist she visits. We aimed to lower this practice variation by providing standardized and unbiased counseling material. OBJECTIVE: We aimed to develop and test a patient decision aid for opportunistic salpingectomy in women undergoing pelvic gynecologic surgery to either retain the ovaries or opt for sterilization. STUDY DESIGN: We followed a systematic development process based on the International Patient Decision Aid Standards. Data were collected between June 2019 and June 2020, using both qualitative and quantitative methods. The development process that occurred in collaboration with patients and healthcare professionals was overseen by a multidisciplinary steering group and was divided into 4 phases: (1) assessment of decisional needs using individual telephone interviews and questionnaires; (2) development of content and format based on decisional needs, current literature, and guidelines; (3) alpha testing and the first revision round; and (4) alpha testing and the second revision round. RESULTS: An outline of the patient decision aid was developed on the basis of decisional needs, current literature, and guidelines. It became clear that the decision aid should consist of 2 separate paths: one with information specifically for salpingectomy in addition to abdominal surgery and one for salpingectomy as a sterilization method. Both paths contained information on the anatomy and function of ovaries and fallopian tubes, risk reduction of ovarian cancer, and potential benefits and risks of opportunistic salpingectomy. Moreover, the sterilization path contains information on various sterilization methods and risks of unwanted pregnancy. The patient decision aid was developed as an online tool that includes information chapters, a knowledge quiz, consideration statements, and a summary detailing the patient's preferences and considerations. Adjustments were made following alpha testing round 1. The improved patient decision aid was subjected to usability tests (alpha testing round 2), in which it scored an "excellent" in tests with patients and a "good" in tests with gynecologists. Furthermore, our patient decision aid met the requirements of 45 of 49 applicable items from the International Patient Decision Aid Standards criteria. CONCLUSION: In collaboration with patients and healthcare professionals, a patient decision aid was developed on opportunistic salpingectomy and salpingectomy as a sterilization method. Both patients and gynecologists believed it is a useful tool that supports patients in making an informed decision whether to undergo an opportunistic salpingectomy and supports the counseling process by gynecologists.


Asunto(s)
Técnicas de Apoyo para la Decisión , Neoplasias Ováricas/prevención & control , Salpingectomía , Adulto , Femenino , Humanos , Persona de Mediana Edad , Neoplasias Ováricas/cirugía , Prevención Primaria
6.
Eur Radiol ; 32(6): 3839-3845, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35020011

RESUMEN

OBJECTIVES: The current study aims to investigate young adult research participants' experiences with and preferences regarding the disclosure of MRI incidental findings (IFs) in brain imaging research, and to elucidate the impact and long-term effects of IF disclosure on these participants. METHODS: We conducted 11 semi-structured interviews with 10 research participants to whom an IF was disclosed after they participated in brain MRI research at the Donders Institute, Centre for Cognitive Neuroimaging (DCCN) in the Netherlands. Interview transcripts were analyzed using the constant comparative method. RESULTS: The analysis yielded five themes regarding the impact of IF disclosure: the initial shock of disclosure, a period of uncertainty, results of the follow-up examination, long-term impact, and participants' biomedical background. Participants were primarily impacted by the uncertainty in the period immediately following IF disclosure. For our participants, disclosure has had no health benefits and some, albeit mostly temporary and limited, negative impact. CONCLUSIONS: Our study suggests that it is important to carefully consider IF disclosure in a population of young healthy participants and emphasizes the relevance of systematic, large-scale follow-up studies to monitor risks and benefits of IF disclosure in this population. The insights from this study can be of added value to improve current research procedures or frameworks for the management and disclosure of IFs in imaging studies. KEY POINTS: • Participants were primarily impacted by the uncertainty in the period immediately following IF disclosure. • Our study suggests that it is important to carefully consider IF disclosure in a population of healthy young adult participants. • Our study emphasizes the relevance of systematic, large-scale follow-up studies to monitor the risks and benefits of IF disclosure in this population.


Asunto(s)
Revelación , Hallazgos Incidentales , Encéfalo/diagnóstico por imagen , Humanos , Neuroimagen , Investigación Cualitativa , Adulto Joven
7.
J Adv Nurs ; 78(10): 3358-3370, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-35765746

RESUMEN

AIMS: To explore lived experiences of patients recovering from COVID-19-associated intensive care unit acquired weakness and to provide phenomenological descriptions of their recovery. DESIGN: A qualitative study following hermeneutic phenomenology. METHODS: Through purposeful sampling, 13 participants with COVID-19-associated intensive care unit acquired weakness were recruited with diversity in age, sex, duration of hospitalization and severity of muscle weakness. Semi-structured in-depth interviews were conducted from 4 to 8 months after hospital discharge, between July 2020 and January 2021. Interviews were transcribed verbatim and analysed using hermeneutic phenomenological analysis. RESULTS: The analysis yielded five themes: 'waking up in alienation', 'valuing human contact in isolation', 'making progress by being challenged', 'coming home but still recovering' and 'finding a new balance'. The phenomenological descriptions reflect a recovery process that does not follow a linear build-up, but comes with moments of success, setbacks, trying new steps and breakthrough moments of achieving mobilizing milestones. CONCLUSION: Recovery from COVID-19-associated intensive care unit acquired weakness starts from a situation of alienation. Patients long for familiarity, for security and for recognition. Patients want to return to the familiar situation, back to the old, balanced, bodily self. It seems possible for patients to feel homelike again, not only by changing their outer circumstances but also by changing the understanding of themselves and finding a new balance in the altered situation. IMPACT: Muscle weakness impacts many different aspects of ICU recovery in critically ill patients with COVID-19-associated intensive care unit acquired weakness. Their narratives can help nurses and other healthcare professionals, both inside and outside of the intensive care unit, to empathize with patient experiences. When healthcare professionals connect to the lifeworld of patients, they will start to act and communicate differently. These insights could lead to optimized care delivery and meeting patients' needs in this pandemic or a possible next.


Asunto(s)
COVID-19 , Enfermedad Crítica , Hermenéutica , Humanos , Unidades de Cuidados Intensivos , Debilidad Muscular/etiología , Investigación Cualitativa
8.
BMC Med Educ ; 22(1): 95, 2022 Feb 12.
Artículo en Inglés | MEDLINE | ID: mdl-35151292

RESUMEN

BACKGROUND: Although students are increasingly involved in curriculum design, empirical research on practices of actual student participation is sparse. The purpose of this study is to explore the experiences of students who collaborated in the organizing committee of a large-scale educational event, the Radboud Student Conference (RSC), for fellow students. METHODS: We conducted three focus group interviews, in which 17 (bio) medical students of three different organizing teams shared their experiences regarding the organization of the large-scale teaching event. The analysis was conducted using thematic content analysis, in which the codes and codebook were constructed on the basis of the data. RESULTS: The following four themes were derived from the data. 1) Collaboration, which concentrated on fellow students, teachers who were involved as supervisors, and persons outside the organizing team such as caterers, educational support office members, lecturers, physicians and researchers. 2) Planning and division of labor, with students experiencing a mutual dependence and noticing a gradual improvement of their skills. 3) Freedom implies responsibility, which indicted that students experienced a significant freedom to develop the RSC week, but at the same time felt the responsibility to deliver a successful final week of the academic year. 4) Personal development, where students mentioned the opportunity to practice skills that differed from standard (bio) medical electives. CONCLUSIONS: We conclude that (bio) medical students are capable of bearing the responsibility to organize a large-scale educational event. Organizing the RSC was an educational experience in the form of cooperative and experiential learning which contributed to students' personal development. Organizing the event gave students both a sense of freedom and the responsibility to succeed. Supervision of faculty members seemed a prerequisite, and tended to be supportive rather than guiding.


Asunto(s)
Educación de Pregrado en Medicina , Estudiantes de Medicina , Curriculum , Docentes , Humanos , Aprendizaje Basado en Problemas
9.
Clin Infect Dis ; 70(6): 1075-1082, 2020 03 03.
Artículo en Inglés | MEDLINE | ID: mdl-31056690

RESUMEN

BACKGROUND: Our aim in this study was to develop quality indicators (QIs) for outpatient parenteral antimicrobial therapy (OPAT) care that can be used as metrics for quality assessment and improvement. METHODS: A RAND-modified Delphi procedure was used to develop a set of QIs. Recommendations on appropriate OPAT care in adults were retrieved from the literature using a systematic review and translated into potential QIs. These QIs were appraised and prioritized by a multidisciplinary panel of international OPAT experts in 2 questionnaire rounds combined with a meeting between rounds. RESULTS: The procedure resulted in 33 OPAT-specific recommendations. The following QIs that describe recommended OPAT care were prioritized by the expert panel: the presence of a structured OPAT program, a formal OPAT care team, a policy on patient selection criteria, and a treatment and monitoring plan; assessment for OPAT should be performed by the OPAT team; patients and family should be informed about OPAT; there should be a mechanism in place for urgent discussion and review of emergent clinical problems, and a system in place for rapid communication; laboratory results should be delivered to physicians within 24 hours; and the OPAT team should document clinical response to antimicrobial management, document adverse events, and monitor QIs for OPAT care and make these data available. CONCLUSIONS: We systematically developed a set of 33 QIs for optimal OPAT care, of which 12 were prioritized by the expert panel. These QIs can be used to assess and improve the quality of care provided by OPAT teams.


Asunto(s)
Antiinfecciosos , Pacientes Ambulatorios , Adulto , Antibacterianos/uso terapéutico , Técnica Delphi , Humanos , Indicadores de Calidad de la Atención de Salud
10.
BMC Health Serv Res ; 20(1): 1024, 2020 Nov 10.
Artículo en Inglés | MEDLINE | ID: mdl-33168083

RESUMEN

BACKGROUND: In the Netherlands, the for-profit sector has gained a substantial share of nursing home care within just a few years. The ethical question that arises from the growth of for-profit care is whether the market logic can be reconciled with the provision of healthcare. This question relates to the debate on the Moral Limits of Markets (MLM) and commodification of care. METHODS: The contribution of this study is twofold. Firstly, we construct a theoretical framework from existing literature; this theoretical framework differentiates four logics: the market, bureaucracy, professionalism, and care. Secondly, we follow an empirical ethics approach; we used three for-profit nursing homes as case studies and conducted qualitative interviews with various stakeholders. RESULTS: Four main insights emerge from our empirical study. Firstly, there are many aspects of the care relationship (e.g. care environment, personal relationships, management) and every aspect of the relationship should be considered because the four logics are reconciled differently for each aspect. The environment and conditions of for-profit nursing homes are especially commodified. Secondly, for-profit nursing homes pursue a different professional logic from the traditional, non-profit sector - one which is inspired by the logic of care and which contrasts with bureaucratic logic. However, insofar as professionals in for-profit homes are primarily responsive to residents' wishes, the market logic also prevails. Thirdly, a multilevel approach is necessary to study the MLM in the care sector since the degree of commodification differs by level. Lastly, it is difficult for the market to engineer social cohesion among the residents of nursing homes. CONCLUSIONS: The for-profit nursing home sector does embrace the logic of the market but reconciles it with other logics (i.e. logic of care and logic of professionalism). Importantly, for-profit nursing homes have created an environment in which care professionals can provide person-oriented care, thereby reconciling the logic of the market with the logic of care.


Asunto(s)
Atención a la Salud , Sector de Atención de Salud , Privatización/ética , Profesionalismo , Humanos , Cuidados a Largo Plazo , Modelos Teóricos , Países Bajos , Casas de Salud/economía , Organizaciones sin Fines de Lucro
12.
Bioethics ; 32(3): 171-183, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29442381

RESUMEN

Newborn screening (NBS) involves the collection of blood from the heel of a newborn baby and testing it for a list of rare and inheritable disorders. New biochemical screening technologies led to expansions of NBS programs in the first decade of the 21st century. It is expected that they will in time be replaced by genetic sequencing technologies. These developments have raised a lot of ethical debate. We reviewed the ethical literature on NBS, analyzed the issues and values that emerged, and paid particular interest to the type of impacts authors think NBS should have on the lives of children and their families. Our review shows that most authors keep their ethical reflection confined to policy decisions, about for instance (a) the purpose of the program, and (b) its voluntary or mandatory nature. While some authors show appreciation of how NBS information empowers parents to care for their (diseased) children, most authors consider these aspects to be 'private' and leave their evaluation up to parents themselves. While this division of moral labor fits with the liberal conviction to leave individuals free to decide how they want to live their private lives, it also silences the ethical debate about these issues. Given the present and future capacity of NBS to offer an abundance of health-related information, we argue that there is good reason to develop a more substantive perspective to whether and how NBS can contribute to parents' good care for children.


Asunto(s)
Acceso a la Información , Actitud , Tecnología Biomédica , Cuidadores , Tamizaje Neonatal/ética , Padres , Autonomía Personal , Toma de Decisiones , Humanos , Recién Nacido , Principios Morales , Tamizaje Neonatal/métodos , Política
13.
Int J Qual Health Care ; 30(7): 545-550, 2018 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-29635336

RESUMEN

OBJECTIVE: Hospital boards are legally responsible for the quality of care delivered by healthcare professionals in their hospitals, but experience difficulties in overseeing quality and safety risks. This study aimed to select a core set of parameters for boards to govern quality of care in the intensive care unit (ICU). DESIGN: Two-round Delphi study. SETTING: Two university hospitals in the Netherlands. PARTICIPANTS: An expert panel of 12 former ICU patients or their family members, 12 ICU nurses, 12 ICU physicians and 12 members of boards of directors and quality managers. MAIN OUTCOME MEASURES: Participants indicated the relevance of existing parameters for assessing the quality of ICU care for governance purposes (round 1) and selected 10 quality parameters that together provide boards of directors with a good representation of quality of care in their ICU (round 2). RESULTS: We identified 122 quality parameters related to care in the ICU, which we limited to a short list to present to participants in round 1. The response rate was 94% in round 1 and 85% in round 2. The final set consisted of the 10 most frequently selected quality parameters per hospital. Five parameters were included in both sets; all related to patient safety and continuous quality improvement. CONCLUSIONS: Parameters in the core set were mostly qualitative and generic, rather than quantitative and ICU-specific in nature. To engage in a true dialog about quality of care, boards are more interested in the story behind the numbers than in just the numbers themselves.


Asunto(s)
Administración Hospitalaria/normas , Unidades de Cuidados Intensivos/normas , Garantía de la Calidad de Atención de Salud/métodos , Técnica Delphi , Familia , Hospitales Universitarios/organización & administración , Humanos , Países Bajos , Pacientes , Personal de Hospital
14.
BMC Health Serv Res ; 17(1): 251, 2017 04 04.
Artículo en Inglés | MEDLINE | ID: mdl-28376872

RESUMEN

BACKGROUND: Evidence indicates that suboptimal clinical handover from the intensive care unit (ICU) to general wards leads to unnecessary ICU readmissions and increased mortality. We aimed to gain insight into barriers and facilitators to implement and use ICU discharge practices. METHODS: A mixed methods approach was conducted, using 1) 23 individual and four focus group interviews, with post-ICU patients, ICU managers, and nurses and physicians working in the ICU or general ward of ten Dutch hospitals, and 2) a questionnaire survey, which contained 27 statements derived from the interviews, and was completed by 166 ICU physicians (21.8%) from 64 Dutch hospitals (71.1% of the total of 90 Dutch hospitals). RESULTS: The interviews resulted in 66 barriers and facilitators related to: the intervention (e.g., feasibility); the professional (e.g., attitude towards checklists); social factors (e.g., presence or absence of a culture of feedback); and the organisation (e.g., financial resources). A facilitator considered important by ICU physicians was a checklist to structure discharge communication (92.2%). Barriers deemed important were lack of a culture of feedback (55.4%), an absence of discharge criteria (23.5%), and an overestimation of the capabilities of general wards to care for complex patients by ICU physicians (74.7%). CONCLUSIONS: Based on the barriers and facilitators found in this study, improving handover communication, formulating specific discharge criteria, stimulating a culture of feedback, and preventing overestimation of the general ward are important to effectively improve the ICU discharge process.


Asunto(s)
Unidades de Cuidados Intensivos , Alta del Paciente/normas , Seguridad del Paciente/normas , Mejoramiento de la Calidad , Adulto , Lista de Verificación , Cuidados Críticos/métodos , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Países Bajos , Pase de Guardia , Habitaciones de Pacientes , Investigación Cualitativa , Encuestas y Cuestionarios
15.
BMC Anesthesiol ; 16(1): 25, 2016 05 03.
Artículo en Inglés | MEDLINE | ID: mdl-27142161

RESUMEN

BACKGROUND: Internationally, there is no consensus on how to best deal with admission requests in cases of full ICU bed occupancy. Knowledge about the degree of dissension and insight into the reasons for this dissension is lacking. Information about the opinion of ICU physicians can be used to improve decision-making regarding allocation of ICU resources. The aim of this study was to: Assess which factors play a role in the decision-making process regarding the admission of ICU patients; Assess the adherence to a Dutch guideline pertaining to rationing of ICU resources; Investigate factors influencing the adherence to this guideline. METHODS: In March 2013, an online questionnaire was sent to all ICU physician members (n = 761, in 90 hospitals) of the Dutch Society for Intensive Care. RESULTS: 166 physicians (21.8 %) working in 64 different Dutch hospitals (71.1 %) completed the questionnaire. Factors associated with a patient's physical condition and quality of life were generally considered most important in admission decisions. Scenario-based adherence to the Dutch guideline "Admission request in case of full ICU bed occupancy" was found to be low (adherence rate 50.0 %). There were two main reasons for this poor compliance: unfamiliarity with the guideline and disagreement with the fundamental approach underlying the guideline. CONCLUSIONS: Dutch ICU physicians disagree about how to deal with admission requests in cases of full ICU bed occupancy. The results of this study contribute to the discussion about the fundamental principles regarding admission of ICU patients in case of full bed occupancy.


Asunto(s)
Actitud del Personal de Salud , Ocupación de Camas , Unidades de Cuidados Intensivos , Admisión del Paciente , Adulto , Toma de Decisiones , Femenino , Adhesión a Directriz/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Países Bajos , Médicos/psicología , Encuestas y Cuestionarios , Adulto Joven
16.
BMC Med Ethics ; 16: 9, 2015 Feb 26.
Artículo en Inglés | MEDLINE | ID: mdl-25880418

RESUMEN

BACKGROUND: There have been few empirical studies into what non-medical factors influence physicians and nurses when deciding about admission and discharge of ICU patients. Information about the attitudes of healthcare professionals about this process can be used to improve decision-making about resource allocation in intensive care. To provide insight into ethical problems that influence the ICU admission and discharge process, we aimed to identify and explore ethical dilemmas healthcare professionals are faced with. METHODS: This was an explorative, descriptive study using qualitative methods (individual and focus group interviews). We conducted 19 individual interviews and 4 focus group interviews with nurses and physicians working in the ICU or the general ward of 10 Dutch hospitals. RESULTS: The ethical problems in the context of ICU admission and discharge can be divided into problems concerning full bed occupancy and problems related to treatment decisions. The gap between the high level of care the ICU can provide and the lower care level in the general ward sometimes leads to mutual misunderstandings. Our results indicate that when professionals of different wards feel there is a collective responsibility and effort to solve a problem, this helps to prevent or alleviate moral distress. ICU patients' wishes are often unknown, causing healthcare professionals to err on the side of more treatment. Additionally, the highly technological nature of intensive care appears to encourage over-treatment. CONCLUSIONS: It is important for ICUs and general wards to communicate and cooperate well, since there is a mutual dependency for optimal patient flow between the different departments. Interventions that improve the understanding and cooperation between these wards may help mitigate ethical problems. The nature of the ICU environment makes it important for healthcare professionals to be aware of the risk of over-treatment, reflect on why they do what they do, and be mindful of a possible negative impact of over-treatment on their patients. Early discussion of a patient's wishes with regard to treatment options is important in preventing over-treatment.


Asunto(s)
Actitud del Personal de Salud , Cuidados Críticos/ética , Toma de Decisiones/ética , Ética Médica , Ética en Enfermería , Unidades de Cuidados Intensivos , Calidad de la Atención de Salud , Conducta Cooperativa , Grupos Focales , Mal Uso de los Servicios de Salud , Humanos , Relaciones Interprofesionales , Principios Morales , Países Bajos , Enfermeras y Enfermeros , Médicos , Investigación Cualitativa , Estrés Psicológico , Encuestas y Cuestionarios
17.
Ned Tijdschr Geneeskd ; 1682024 01 30.
Artículo en Holandés | MEDLINE | ID: mdl-38525867

RESUMEN

Medically assisted reproduction for transgender individuals has been a subject of discussion and debate. While the primary focus used to be whether transgender individuals should have access to assisted reproduction at all, the question has now shifted to what constitutes just access to assisted reproduction for transgender people. It is instructive to compare their access to this care with that of cisgender heterosexual individuals and to critically reflect on the cis- and heteronormative context in which this care takes place. To establish just fertility care for transgender individuals, it is essential to dismantle the barriers imposed by these norms.


Asunto(s)
Preservación de la Fertilidad , Personas Transgénero , Humanos , Fertilidad
18.
Patient Educ Couns ; 119: 108064, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37976670

RESUMEN

OBJECTIVES: Non-normative uncertainty (uncertainty about empirical facts) and normative uncertainty (uncertainty about moral values or beliefs) regarding unsolicited findings (UFs) might play an important role in clinical genetics. Identifying normative uncertainty is of special interest since it might guide towards novel directions for counseling practice. This study aims to gain insight into the role of non-normative and normative uncertainty regarding UFs, as expressed by counselees and counselors. METHODS: We performed a secondary qualitative analysis of interviews with counselees (n = 20) and counselors (n = 20) who had been confronted with UFs. Following a deductive approach, we used Han et al.'s existing theoretical framework of uncertainty, in which we additionally incorporated normative uncertainty. RESULTS: Major issues of non-normative uncertainty were practical and personal for counselees, whilst counselors' uncertainty pertained mainly to scientific issues. Normative uncertainty was a major theme throughout the interviews. We encountered the moral conflicts of autonomy vs. beneficence and non-maleficence and of autonomy vs. truthfulness. CONCLUSION: Non-normative uncertainty regarding UFs highlights the need to gain more insight in their penetrance and clinical utility. This study suggests moral conflicts are a major source of feelings of uncertainty in clinical genetics. PRACTICE IMPLICATIONS: Exploring counselees' non-normative uncertainties and normative conflicts seems a prerequisite to optimize genetic counseling.


Asunto(s)
Consejeros , Pruebas Genéticas , Humanos , Incertidumbre , Asesoramiento Genético/psicología , Consejeros/psicología , Emociones
19.
Physiother Theory Pract ; : 1-33, 2023 Jul 27.
Artículo en Inglés | MEDLINE | ID: mdl-37498170

RESUMEN

INTRODUCTION: Physical therapists supporting patients in intensive care unit (ICU) rehabilitation can improve their clinical practice with insight in patients' lived body experiences. OBJECTIVE: To gain insight in patients' lived body experiences during ICU stay and in recovery from critical illness. METHODS: Through a comprehensive systematic literature search, 45 empirical phenomenological studies were identified. Patients' lived body experiences were extracted from these studies and synthesized following the seven-phase interpretative approach as described by Noblit and Hare. RESULTS: Three lines of argument were illuminated: 1) "recovery from critical illness starts from a situation in which patients experience the lived body as unable;" 2) "patients experience progress in recovery from critical illness when the lived body is empowered;" and 3) "recovery from critical illness results in a lived body changed for life." Eleven third-order constructs were formulated as different kinds of bodies: 1) "an intolerable body;" 2) "an alienated body;" 3) "a powerless body;" 4) "a dependent body;" 5) "a restricted body;" 6) "a muted body;" 7) "a touched body;" 8) "a transforming body;" 9) "a re-discovering body;" 10) "an unhomelike body;" and 11) "a remembering body." CONCLUSION: Patients' lived body experiences during ICU stay and in recovery from critical illness have richly been described in phenomenological studies and were synthesized in this meta-ethnography.

20.
PLoS One ; 18(8): e0286978, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37616248

RESUMEN

BACKGROUND: The COVID-19 pandemic has prompted many countries to formulate guidelines on how to deal with a worst-case scenario in which the number of patients needing intensive care unit (ICU) care exceeds the number of available beds. This study aims to explore the experiences of triage teams when triaging fictitious patients with the Dutch triage guidelines. It provides an overview of the factors that influence decision-making when performing ICU triage with triage guidelines. METHODS: Eight triage teams from four hospitals were given files of fictitious patients needing intensive care and instructed to triage these patients. Sessions were observed and audio-recorded. Four focus group interviews with triage team members were held to reflect on the sessions and the Dutch guidelines. The results were analyzed by inductive content analysis. RESULTS: The Dutch triage guidelines were the main basis for making triage decisions. However, some teams also allowed their own considerations (outside of the guidelines) to play a role when making triage decisions, for example to help avoid using non-medical criteria such as prioritization based on age group. Group processes also played a role in decision-making: triage choices can be influenced by the triagists' opinion on the guidelines and the carefulness with which they are applied. Intensivists, being most experienced in prognostication of critical illness, often had the most decisive role during triage sessions. CONCLUSIONS: Using the Dutch triage guidelines is feasible, but there were some inconsistencies in prioritization between teams that may be undesirable. ICU triage guideline writers should consider which aspects of their criteria might, when applied in practice, lead to inconsistencies or ethically questionable prioritization of patients. Practical training of triage team members in applying the guidelines, including explanation of the rationale underlying the triage criteria, might improve the willingness and ability of triage teams to follow the guidelines closely.


Asunto(s)
Unidades de Cuidados Intensivos , Guías de Práctica Clínica como Asunto , Humanos , COVID-19/epidemiología , Cuidados Críticos , Pandemias , Triaje
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