4.4 Article

Why is it hard to make progress in assessing children's decision-making competence?

期刊

BMC MEDICAL ETHICS
卷 16, 期 -, 页码 -

出版社

BMC
DOI: 10.1186/1472-6939-16-1

关键词

Mental competence; Informed consent; Minor; Decision-making; Clinical research; Treatment; Assessment

资金

  1. Netherlands Organization for Health Research and Development (ZonMW)

向作者/读者索取更多资源

Background: For decades, the discussion on children's competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children's interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children's competence to consent, however, is currently not assessed in a standardized way. Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children's competence. This article aims at identifying these gaps in knowledge and suggests options for dealing with the obstacles in empirical research in order to advance policies and practices regarding children's medical decision-making competence. Discussion: Understanding children's competency is hampered by the law. Legislative regulations concerning competency are established on a strong presumption that persons older than a certain age are competent, whereas younger persons are not. Furthermore, a number of contextual factors are believed to be of influence on a child's decision-making competence: the developmental stage of children, the influence of parents and peers, the quality of information provision, life experience, the type of medical decision, and so on. Ostensibly, these diverse and extensive barriers hinder any form of advancement in this conflicted area. Addressing these obstacles encourages the discussion on children's competency, in which the most prominent question concerns the lack of a clear operationalization of children's competence to consent. Empirical data are needed to substantiate the discussion. Summary: The empirical approach offers an opportunity to give direction to the debate. Recommendations for future research include: studying a standardized assessment instrument covering all four relevant dimensions of competence (understanding, reasoning, appreciation, expressing a choice), including a study population of children covering the full age range of 7 to 18 years, improving information provision, and assessing relevant contextual data.

作者

我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。

评论

主要评分

4.4
评分不足

次要评分

新颖性
-
重要性
-
科学严谨性
-
评价这篇论文

推荐

Article Immunology

Parents' Perspectives and Societal Acceptance of Implementation of Newborn Screening for SCID in the Netherlands

Maartje Blom, Robbert G. M. Bredius, Marleen E. Jansen, Gert Weijman, Evelien A. Kemper, Clementien L. Vermont, Iris H. I. M. Hollink, Willem A. Dik, Joris M. van Montfrans, Marielle E. van Gijn, Stefanie S. Henriet, Koen J. van Aerde, Wouter Koole, Arjan C. Lankester, Eugenie H. B. M. Dekkers, Peter C. J. Schielen, Martine C. de Vries, Lidewij Henneman, Mirjam van der Burg

Summary: The majority of parents expressed support for NBS for SCID from both a public health and personal perspective, with emphasis on the emotional impact of an abnormal screening result. The study highlights the importance of uniform follow-up protocols and adequate information provision to address (long-term) stress and anxiety experienced by parents during and after referral. Moving towards universal SCID screening for all infants requires a close partnership of stakeholders, immunologists, geneticists, and pediatricians-immunologists in different countries.

JOURNAL OF CLINICAL IMMUNOLOGY (2021)

Review Peripheral Vascular Disease

Hypertension awareness, treatment and control among ethnic minority populations in Europe: a systematic review and meta-analysis

Eva L. van der Linden, Brandon N. Couwenhoven, Erik J. A. J. Beune, Joost G. Daams, Bert-Jan H. van den Born, Charles Agyemang

Summary: The study found differences in hypertension awareness, treatment, and control levels between ethnic minority populations (EMPs) and European host populations (EHPs). African origin populations were more likely to be aware and treated for hypertension, but less likely to have their blood pressure controlled. South Asian populations were more likely to be aware of hypertension, but had similar treatment and control rates compared to EHPs.

JOURNAL OF HYPERTENSION (2021)

Article Oncology

Serum hepcidin concentrations in relation to iron status in children with type 1 diabetes

Mirjam Vreugdenhil, Marjolijn D. Akkermans, Rachel P. L. van Swelm, Coby M. Laarakkers, Euphemia C. A. M. Houdijk, Boudewijn Bakker, Agnes Clement-de Boers, Danielle C. M. van der Kaay, Martine C. de Vries, M. Claire Woltering, Dick Mul, Johannes B. van Goudoever, Frank Brus

Summary: This study investigated the relationship between hepcidin concentrations and iron status in children with type 1 diabetes, finding that hepcidin levels were significantly higher in patients with functional iron deficiency compared to those with absolute iron deficiency, but did not differ from those with normal iron status. Multiple hepcidin measurements over time may be more useful in assessing functional iron deficiency in children with type 1 diabetes.

PEDIATRIC HEMATOLOGY AND ONCOLOGY (2021)

Review Pediatrics

Chronically ill children's participation and health outcomes in shared decision-making: a scoping review

R. O. Wijngaarde, I. Hein, J. Daams, J. B. Van Goudoever, D. T. Ubbink

Summary: Based on the United Nations Conventions on the Rights of the Child, children have the right to participate in matters concerning their wellbeing. Studies have shown that chronically and/or critically ill children can benefit from decision support tools to enhance their involvement in pediatric shared decision-making, leading to increased knowledge and satisfaction, and reduced decisional conflicts.

EUROPEAN JOURNAL OF PEDIATRICS (2021)

Review Psychiatry

Online Indicated Preventive Mental Health Interventions for Youth: A Scoping Review

Marilon van Doorn, Laurens A. Nijhuis, Mees D. Egeler, Joost G. Daams, Arne Popma, Therese van Amelsvoort, Carla McEnery, John F. Gleeson, Ferko G. Ory, Kate A. Avis, Emma Ruigt, Monique W. M. Jaspers, Mario Alvarez-Jimenez, Dorien H. Nieman

Summary: Recent research on indicated online preventive interventions for youth aged 12-25 experiencing early stages of mental health complaints showed promising results in reducing various mental health issues and increasing positive mental health indicators. Online interventions with a combination of clinical and peer moderation appeared to have the most stable and highest effect sizes. However, methodological shortcomings and a lack of transdiagnostic approaches were identified in the included studies.

FRONTIERS IN PSYCHIATRY (2021)

Review Computer Science, Information Systems

Barriers and facilitators influencing medication-related CDSS acceptance according to clinicians: A systematic review

Leonie Westerbeek, Kimberley J. Ploegmakers, Gert-Jan De Bruijn, Annemiek J. Linn, Julia C. M. van Weert, Joost G. Daams, Nathalie van der Velde, Henk C. van Weert, Ameen Abu-Hanna, Stephanie Medlock

Summary: This systematic literature review provides an overview of barriers and facilitators for the acceptance of medication-related CDSS among clinicians, categorized within the HOT-fit model. The most frequently reported factors relate to the usefulness and relevance of information, as well as the ease of use and efficacy of the system. These results can serve as a foundation for future studies in developing medication-related CDSS.

INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS (2021)

Review Health Care Sciences & Services

Extensive variability of work participation outcomes measured in randomized controlled trials: a systematic review

Margarita Ravinskaya, Jos H. Verbeek, Miranda Langendam, Joost G. Daams, Carel T. J. Hulshof, Ira Madan, Suzanne M. M. Verstappen, Marije Hagendijk, Regina Kunz, Jan L. Hoving

Summary: This study aimed to investigate how work participation outcomes are measured in randomized controlled trials internationally and across disciplines. A total of 269 trials reporting on 435 work participation outcomes from 2014 to 2019 were identified, with outcomes grouped into four main categories: employment status, absence from work, at-work productivity loss, and employability. Extensive variability existed in the measurement methods and instruments used across all categories, highlighting the need for a Core Outcome Set for work participation.

JOURNAL OF CLINICAL EPIDEMIOLOGY (2022)

Article Pediatrics

Consent for Delivery Room Studies: What Can Be Learned from Perceptions of Parents

Maria C. den Boer, Mirjam Houtlosser, Ruben S. G. M. Witlox, Henriette A. van Zanten, Martine C. de Vries, Arjan B. te Pas

Summary: This study explores parental experiences with and perceptions of consent for delivery room (DR) studies. Most parents considered being approached for DR studies as valuable, attributed to appropriate timing and communication, compassion, and non-obtrusive investigators. Parents generally decided to accept or decline study participation based on perceived risk. There was no consensus among parents on deferred consent for DR studies running at the NICU, but deferred consent was considered appropriate for observational studies. Parental misunderstanding of various aspects of DR studies was common. Understanding parental perceptions of consent for DR studies can help improve parental consent procedures.

NEONATOLOGY (2022)

Article Environmental Sciences

A Cohort Study on the Effect of Parental Mind-Mindedness in Parent-Child Interaction Therapy

Merlijn Meynen, Cristina Colonnesi, Marielle E. Abrahamse, Irma Hein, Geert-Jan J. M. Stams, Ramon J. L. L. Lindauer

Summary: The study examined the impact of parental mind-mindedness on the outcomes of Parent-Child Interaction Therapy (PCIT). Results showed that parents with medium-high level of mind-mindedness displayed more improvement in parenting skills and better outcomes in PCIT.

INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH (2022)

Article Orthopedics

A first step towards a framework for interventions for individual working practice to prevent work-related musculoskeletal disorders: a scoping review

Bert van de Wijdeven, Bart Visser, Joost Daams, Paul P. F. M. Kuijer

Summary: Work-related musculoskeletal disorders (WMSDs) are an important topic in occupational health. This study conducted a scoping review to identify and categorize interventions for individual working practice (IWP) aimed at reducing exposure to physical ergonomic risk factors. Ultimately, eight overarching categories of interventions for IWP were identified, providing a starting point for the development and evaluation of effective interventions to prevent WMSDs.

BMC MUSCULOSKELETAL DISORDERS (2023)

Article Cardiac & Cardiovascular Systems

Applicability of European Society of Cardiology guidelines according to gross national income

Wouter B. van Dijk, Ewoud Schuit, Rieke van der Graaf, Rolf H. H. Groenwold, Sara Laurijssen, Barbara Casadei, Marco Roffi, Seye Abimbola, Martine C. de Vries, Diederick E. Grobbee

Summary: This study evaluated the feasibility of implementing ESC guidelines on general cardiology in 102 countries and found that compliance varied based on the country's income level. High-income countries had better compliance, while low-income countries had lower compliance, largely due to lack of reimbursement and financial barriers.

EUROPEAN HEART JOURNAL (2023)

Article Psychology, Clinical

Common elements of evidence-based trauma therapy for children and adolescents

Lieke H. Kooij, Thimo M. van der Pol, Joost G. Daams, Irma M. Hein, Ramon J. L. Lindauer

Summary: This study aims to extract common elements from evidence-based trauma therapies for children and adolescents. A diverse group of Dutch trauma therapists used an existing and modified Delphi method to create a common element list. The study found a substantial overlap of techniques and mechanisms across the five evidence-based trauma therapies, indicating strong similarities between the therapies. These identified elements provide a basis for research and clinical practice in tailored trauma therapies for individual children and their support systems.

EUROPEAN JOURNAL OF PSYCHOTRAUMATOLOGY (2022)

Review Pediatrics

Early life antibiotics and childhood gastrointestinal disorders: a systematic review

Kim Kamphorst, Emmy Van Daele, Arine M. Vlieger, Joost G. Daams, Jan Knol, Ruurd M. van Elburg

Summary: This systematic review found that the use of antibiotics in early life might increase the risk of gastrointestinal disorders later in childhood in term born children, particularly in inflammatory bowel disease and coeliac disease. Moderate evidence was also found for eosinophilic esophagitis, while no association was found with functional constipation in the first year.

BMJ PAEDIATRICS OPEN (2021)

Article Pediatrics

Breaking bad news: what parents would like you to know

Marije A. Brouwer, Els L. M. Maeckelberghe, Agnes van der Heide, Irma M. Hein, Eduard A. A. E. Verhagen

Summary: This study examines the barriers that parents experience in the communication of bad news, providing practical insights on how to improve the communication process to better meet the needs of parents. It highlights the importance of timely communication and practical aspects in breaking bad news to parents.

ARCHIVES OF DISEASE IN CHILDHOOD (2021)

暂无数据