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2.
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
3.
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
4.
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
5.
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
6.
J Crit Care ; 78: 154363, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37393864

RESUMEN

PURPOSE: Antibiotic therapy is commonly prescribed longer than recommended in intensive care patients (ICU). We aimed to provide insight into the decision-making process on antibiotic therapy duration in the ICU. METHODS: A qualitative study was conducted, involving direct observations of antibiotic decision-making during multidisciplinary meetings in four Dutch ICUs. The study used an observation guide, audio recordings, and detailed field notes to gather information about the discussions on antibiotic therapy duration. We described the participants' roles in the decision-making process and focused on arguments contributing to decision-making. RESULTS: We observed 121 discussions on antibiotic therapy duration in sixty multidisciplinary meetings. 24.8% of discussions led to a decision to stop antibiotics immediately. In 37.2%, a prospective stop date was determined. Arguments for decisions were most often brought forward by intensivists (35.5%) and clinical microbiologists (22.3%). In 28.9% of discussions, multiple healthcare professionals participated equally in the decision. We identified 13 main argument categories. While intensivists mostly used arguments based on clinical status, clinical microbiologists used diagnostic results in the discussion. CONCLUSIONS: Multidisciplinary decision-making regarding the duration of antibiotic therapy is a complex but valuable process, involving different healthcare professionals, using a variety of argument-types to determine the duration of antibiotic therapy. To optimize the decision-making process, structured discussions, involvement of relevant specialties, and clear communication and documentation of the antibiotic plan are recommended.


Asunto(s)
Antibacterianos , Unidades de Cuidados Intensivos , Humanos , Estudios Prospectivos , Antibacterianos/uso terapéutico , Cuidados Críticos , Investigación Cualitativa , Toma de Decisiones
7.
Patient Educ Couns ; 112: 107721, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37012192

RESUMEN

Uncertainty is increasingly recognized as a crucial phenomenon throughout medical practice. Research on uncertainty so far has been scattered across disciplines, leading to a lack of consensus about what uncertainty represents and minimal integration of knowledge obtained within isolated disciplines. Currently, a comprehensive view of uncertainty which does justice to normatively or interactionally challenging healthcare settings is lacking. This impedes research teasing apart when and how uncertainty manifests, how all stakeholders experience and value it, and how it affects medical communication and decision-making. In this paper, we argue that we need a more integrated understanding of uncertainty. We illustrate our argument using the context of adolescent transgender care, in which uncertainty occurs in myriad ways. We first sketch how theories of uncertainty have emerged from isolated disciplines, leading to a lack of conceptual integration. Subsequently, we emphasize why it is problematic that no comprehensive approach to uncertainty has yet been developed, using examples from adolescent transgender care. Finally, we advocate an integrated approach of uncertainty to further advance empirical research and to ultimately benefit clinical practice.


Asunto(s)
Atención a la Salud , Humanos , Adolescente , Incertidumbre
8.
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
9.
Artículo en Inglés | MEDLINE | ID: mdl-35897438

RESUMEN

BACKGROUND: Posterior tibial nerve stimulation (PTNS) is one of the treatment modalities for children with therapy-refractory lower urinary tract dysfunction (LUTD). This study used a mixed-methods analysis to gain insight into the experiences of children treated with PTNS and their parents, the effect of treatment on quality of life (QOL) and the effect of PTNS on urinary symptoms. METHODS: Quantitative outcomes were assessed through a single-centre retrospective chart analysis of all children treated with PTNS in a group setting between 2016-2021. Voiding parameters and QOL scores before and after treatment were compared. Qualitative outcomes were assessed by an explorative study involving semi-structured interviews transcribed verbatim and inductively analysed using the constant-comparative method. RESULTS: The data of 101 children treated with PTNS were analysed. Overall improvement of LUTD was seen in 42% and complete resolution in 10%. Average and maximum voided volumes significantly increased. QOL improved in both parents and children independent of the actual effect on urinary symptoms. Interviews revealed PTNS to be well-tolerated. Facilitating PTNS in a group setting led to feelings of recognition in both children and parents. CONCLUSIONS: PTNS is a good treatment in children with therapy-refractory LUTD and provides valuable opportunities for peer support if given in a group setting.


Asunto(s)
Estimulación Eléctrica Transcutánea del Nervio , Sistema Urinario , Niño , Humanos , Calidad de Vida , Estudios Retrospectivos , Nervio Tibial/fisiología , Estimulación Eléctrica Transcutánea del Nervio/métodos , Resultado del Tratamiento
10.
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
11.
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
12.
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
13.
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
14.
Eur J Hum Genet ; 30(2): 170-177, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34697415

RESUMEN

Unsolicited findings (UFs) are uncovered unintentionally and predispose to a disease unrelated to the clinical question. The frequency and nature of UFs uncovered in clinical practice remain largely unexplored. We here evaluated UFs identified during a 5-year period in which 16,482 index patients received clinical whole-exome sequencing (WES). UFs were identified in 0.58% (95/16,482) of index patients, indicating that the overall frequency of UFs in clinical WES is low. Fewer UFs were identified using restricted disease-gene panels (0.03%) than when using whole-exome/Mendeliome analysis (1.03%). The UF was disclosed to 86 of 95 individuals, for reasons of medical actionability. Only 61% of these UFs reside in a gene that is listed on the "ACMG59"-list, representing a list of 59 genes for which the American College of Medical Genetics recommends UF disclosure. The remaining 39% were grouped into four categories: disorders similar to "ACMG59"-listed disorders (25%); disorders for which disease manifestation could be influenced (7%); UFs providing reproductive options (2%); and UFs with pharmacogenetic implications (5%). Hence, our experience shows that UFs predisposing to medically actionable disorders affect a broader range of genes than listed on the "ACMG59", advocating that a pre-defined gene list is too restrictive, and that UFs may require ad hoc evaluation of medical actionability. While both the identification and disclosure of UFs depend on local policy, our lessons learned provide general essential insight into the nature and odds of UFs in clinical exome sequencing.


Asunto(s)
Revelación , Exoma , Pruebas Genéticas , Humanos , Secuenciación del Exoma
15.
JAC Antimicrob Resist ; 3(4): dlab161, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34806004

RESUMEN

BACKGROUND: The acceptability of innovative medical strategies among healthcare providers and patients affects their uptake in daily clinical practice. OBJECTIVES: To explore experiences of healthcare providers and patients with culture-based antibiotic prophylaxis in transrectal prostate biopsy with three swab-screening scenarios: self-sampling at home, self-sampling in the hospital and sampling by a healthcare provider. METHODS: We performed focus group interviews with urologists and medical microbiologists from 11 hospitals and six connected clinical microbiological laboratories. We used Flottorp's comprehensive checklist for identifying determinants of practice to guide data collection and analysis. The experiences of 10 laboratory technicians from five laboratories and 452 patients from nine hospitals were assessed using a questionnaire. RESULTS: Overall, culture-based prophylaxis strategies were experienced as feasible in daily clinical practice. None of the three swab-screening scenarios performed better. For urologists (n = 5), implementation depended on the effectiveness of the strategy. In addition, it was important to them that the speed of existing oncology care pathways is preserved. Medical microbiologists (n = 5) and laboratory technicians (n = 8) expected the strategy to be fairly easy to implement. Patients (n = 430; response rate 95.1%) were generally satisfied with the screening scenario presented to them. To meet the various patients' needs and preferences, multiple scenarios within a hospital are probably needed. CONCLUSIONS: This multi-method study has increased our understanding of the acceptability of culture-based prophylaxis strategies in prostate biopsy, which can help healthcare providers to offer high-quality patient-centred care. The strategy seems relatively straightforward to implement as overall acceptance appears to be high.

16.
Ned Tijdschr Geneeskd ; 1652021 09 08.
Artículo en Holandés | MEDLINE | ID: mdl-34523829

RESUMEN

In Spring 2020, the Netherlands appeared to be poorly prepared for 'code black': a situation in which Intensive Care Unit (ICU) bed shortage would be a reality. Guidelines were developed with medical and non-medical considerations for ICU triage. In recent months, we organized eight simulated triage sessions in four hospitals, as part of a research project. We asked triage teams to prioritize cases of patients in need of ICU care, aided by the guidelines. Data are still being analyzed; here we share some preliminary observations and lessons learned. In our sessions, it was striking how much triage depends on the input of the intensivist, especially when it comes to crucial expertise regarding prognosis and length of stay. Differences in prioritization predominantly depended on different estimations of prognosis and length of stay. The guidelines provide direction, but prioritizing ICU patients can be mentally burdensome for triagists. This requires support and aftercare for triage teams.


Asunto(s)
Pandemias , Triaje , Cuidados Posteriores , Cuidados Críticos , Humanos , Unidades de Cuidados Intensivos
17.
J Pediatr Urol ; 17(5): 691.e1-691.e7, 2021 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-34305009

RESUMEN

BACKGROUND/PURPOSE: Parental decisional conflict and decisional regret are aspects in parental adjustment to childhood elective surgery. This study assessed correlates of parental decisional regret in parents of young boys treated for hypospadias. METHODS: Parents of 261 boys treated for hypospadias at the Radboudumc between 2006 and 2014 were approached to complete questionnaires on socio-demographics, clinical details, postoperative outcomes, decisional conflict and decisional regret. RESULTS: Of the 97 participating parents, 50.5% reported some form of decisional regret, in 11.3% this was moderate to strong. Decisional conflict (ß = .68, p < .001) and psychosocial behavior problems of the child (ß = .20, p < .05) significantly predicted decisional regret. Demographic and medical variables did not correlate with parental decisional regret. CONCLUSIONS: A substantial number of parents report some form of decisional regret regarding the elective surgery for hypospadias in their child. Although most parents only show mild forms of regret, in the perspective of discussions on this surgery in early childhood, future research could shed more light on the interrelationship between medical and psychosocial factors in the process of decision-making around surgery, in boys with hypospadias and their parents.


Asunto(s)
Hipospadias , Niño , Preescolar , Toma de Decisiones , Emociones , Humanos , Hipospadias/cirugía , Masculino , Padres , Encuestas y Cuestionarios
18.
Eur J Hum Genet ; 29(6): 930-939, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33637888

RESUMEN

Unsolicited findings (UFs) in clinical exome sequencing are variants that are unrelated to the initial clinical question the DNA test was performed for, but that may nonetheless be of medical relevance to patients and/or their families. There is limited knowledge about the impact of UFs on patients' lives. In order to characterise patient perceptions of the impact of an UF, we conducted 20 semi-structured face-to-face interviews with patients and/or their relatives to whom an UF predisposing to oncological disease (n = 10) or predisposing to a cardiac condition (n = 10) had been disclosed. We have identified a psychological, physical and financial aspect of the perceived impact of UF disclosure in exome sequencing. Actionability, understanding, patients' pre-test health and social context were influencing factors, according to our participants. Although most expressed considerable psychological impact initially, all but one participant would choose to undergo genetic testing again, knowing what they know now. These novel findings provide insight in patients' perspectives on the impact of UF disclosure. Our study highlights the value of incorporating patients' perceptions in UF disclosure policy.


Asunto(s)
Actitud , Secuenciación del Exoma/ética , Pruebas Genéticas/ética , Hallazgos Incidentales , Adulto , Anciano , Revelación/ética , Femenino , Asesoramiento Genético/psicología , Pruebas Genéticas/métodos , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Secuenciación del Exoma/métodos
19.
Patient Educ Couns ; 104(5): 1206-1212, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33041158

RESUMEN

OBJECTIVE: To explore how shared decision-making (SDM) is learned in clinical practice according to professionals and patients. METHODS: Focus group and individual interviews with interns (n = 9), residents (n = 12), senior physicians (n = 13), and (former) patients and relatives (n = 13) in fertility care and intensive care. RESULTS: Patients and professionals identified barriers and drivers for SDM related to patient, caregiver, and context. Participants agreed: the nuances of SDM are learned in practice, not during undergraduate medical education. Through observing and copying from other professionals, interns and residents describe building their personal "repertoire" of SDM skills, knowledge, and attitude. Professionals indicated it was helpful to see many different examples - both good and bad - of physicians in action. CONCLUSION: Learning SDM is a complicated task for both students and professionals in healthcare. Relevant factors are the involvement of patients, the role of informal learning processes and role models, and the importance of reflective practice. PRACTICE IMPLICATIONS: Learning SDM in practice requires 1) measures to lessen pressures on a meso and macro level that hinder SDM in practice, 2) inventive and precise training and education and paying explicit attention to informal learning processes in clinical practice and learning through role models.


Asunto(s)
Participación del Paciente , Médicos , Actitud del Personal de Salud , Toma de Decisiones , Toma de Decisiones Conjunta , Grupos Focales , Humanos
20.
PLoS One ; 15(11): e0242261, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33180859

RESUMEN

INTRODUCTION: As of December 2019, pregnant women in the Netherlands are offered pertussis vaccination to protect their newborn infant against pertussis infection. However, the manner in which pregnant women decide about this maternal pertussis vaccination is largely unknown. The aim of this study is to gain insight into the decision-making process regarding maternal pertussis vaccination, and to explore the related needs among the vaccine-hesitant subgroup of orthodox Protestant women. METHODS: Charmaz's grounded theory approach was used to develop a decision-making framework. To construct this framework we used an explorative multimethod approach in which in-depth interviews and online focus groups were supplemented by a literature search and research group meetings. This study was carried out in a hypothetical situation since the maternal pertussis vaccination had yet to be implemented in the Dutch immunisation programme at the time of the study. RESULTS: Twenty-five orthodox Protestant women participated in an interview, an online focus group, or in both. The findings of this study resulted in a decision-making framework that included three stages of decision-making; an Orientation stage, a value-based Deliberation stage, and Final decision stage. The Orientation stage included the needs for decision-making categorised into Information needs and Conversation needs. Women indicated that -if they were to receive sufficient time for Orientation and Deliberation- they would be able to reach the stage of Final decision. CONCLUSION: The decision-making framework resulting from our findings can be used by health care professionals to provide women with information and consultation in the decision-making process. Future studies should investigate whether the stages of and needs for decision-making can be found across other vaccine-hesitant subgroups and vaccinations.


Asunto(s)
Toma de Decisiones , Mujeres Embarazadas/psicología , Vacunación/psicología , Adulto , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Vacuna contra la Tos Ferina/inmunología , Embarazo , Religión , Tos Ferina/prevención & control , Adulto Joven
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