Case for persuasion in parental informed consent to promote rational vaccine choices
Original Research
Jennifer O’Neill
Journal of Medical Ethics, 4 May 2020
Abstract
There have been calls for mandatory vaccination legislation to be introduced into the UK in order to tackle the national and international rise of vaccine-preventable disease. While some countries have had some success associated with mandatory vaccination programmes, the Royal College of Paediatrics and Child Health (RCPCH) insist this is not a suitable option for the UK, a country which has seen historical opposition to vaccine mandates. There is a lack of comprehensive data to demonstrate a direct link between mandatory vaccination legislation and increased uptake. While there are examples whereby there has been an improvement, some studies suggest that comparable results can be obtained by strongly recommending vaccinations instead. The RCPCH insist that healthcare workers are ideally placed to engage and inform parents to make every interaction a ‘vaccine opportunity’. This paper calls for a principled, rational approach to interpretations of autonomy which underpin parental informed consent. MacLean’s concept of mutual persuasion could be a vehicle to ensuring parents are suitably informed of both the material risks associated with vaccine choices and to consider the rationality of their decisions, while ultimately upholding parental autonomy. It is argued that this, alongside infrastructural improvement, could create a more sustainable, long-term improvement in childhood vaccination rates in the UK than mandatory vaccination.

Literacy as a Distinct Developmental Domain in Children
Viewpoint
Perri Klass, John S. Hutton, Thomas G. DeWitt
JAMA Pediatrics, 30 March 2020; 174(5) pp 407-408
Abstract
The acquisition of literacy, from earliest emergent stages to full fluency with understanding and self-expression in written language, represents a distinct developmental trajectory. Unlike other developmental arenas, achieving literacy combines environmental stimulation and informal interaction in the preschool years with formal school-based instruction in decoding print and reflects the integration of multiple neuronal networks. Skills children acquire along this literacy trajectory powerfully influence life course, from early school achievement to earning potential to lifelong self-expression and civic engagement. Recognizing this, many pediatric health care professionals have incorporated literacy promotion into primary care, often through Reach Out and Read, an evidence-based model (supported by a national network) that provides parental guidance and children’s books at health supervision visits.

Providing Incentives to Youth Participants in Research: A Literature Review
Research Article
Jenny L. Afkinich, Dara R. Blachman-Demner
Journal of Empirical Research on Human Research Ethics, 19 December 2019
Abstract
The provision of financial incentives to youth involved in research remains an understudied and contentious issue. Although the practice is common and often accepted, a comprehensive understanding of the current status of the literature regarding the potential benefits and limitations is lacking. The primary question this article seeks to answer is as follows: “What are the concerns and best practices identified in the literature for the appropriate and ethical provision of incentives to children and adolescents?” Following a thorough review and screening process, 25 articles were selected and central themes were identified within them. Themes include the following: the wage-payment model, effectiveness for recruitment, effectiveness for retention, financial versus alternative incentives, coerciveness, influence on validity of results, and other ethical dilemmas. Gaps in the literature are discussed. Overall, the literature suggests financial incentives can be provided appropriately to children as long as necessary precautions are taken.

Reflecting on three creative approaches to informed consent with children under six
Lorna Arnott, Loreain Martinez, Kate Wall, Caralyn Blaisdell, Ioanna Palaiologou
British Educational Research Journal, 10 March 2020
Abstract
In an era where children’s rights are paramount, there are still few practical examples to guide us when seeking informed consent from children. This paper therefore makes a significant contribution to the field by examining three practical approaches to negotiating informed consent with young children under 6 years old. We draw on researcher field notes, images and observations from four research projects that employed creative methods for seeking informed consent from young children. We take a reflexive approach, considering how successful the three techniques have been in facilitating young children’s decision making around research participation. Our findings suggest that innovative approaches to informed consent create spaces for children to engage in dialogue and questioning about the research project. However, in order for the approaches to be meaningful they need to be pedagogically-appropriate to the maturity and capabilities of the children. We also demonstrate that irrespective of the approach devised, researchers have a responsibility to ensure consent is continuously negotiated throughout the project through reflexive questioning.

A Survey of Current Practices of Informed Consent by Pediatric Anesthesiologists
Short Report
Allison M Fernandez, Scott C Watkins, David J Clendenin, Erik B Smith, Jenny E Dolan, Ernest Amankwah, Ali Jalali, Luis Ahumada, Anh Thy H Nguyen, Mohamed Rehman, Richard A Elliott
Pediatric Anesthesia, 22 April 2020
Abstract
Informed consent is fundamental to the ethical practice of medicine and carries important legal implications. Of particular relevance to pediatric anesthesia is the Food and Drug Administration’s Drug Safety Communication (DSC), which highlights potential yet theoretical adverse effects on brain development of repeated or prolonged anesthesia administration to children younger than 3 years of age.

Perspectives on Informed Consent Practices for Minimal-Risk Research Involving Foster Youth
Pediatrics Perspective
Mary V. Greiner, Sarah J. Beal and Armand H. Matheny Antommaria
American Academy of Pediatrics, March 2020
Excerpt
There are >430 000 children in protective custody (ie, foster care) in the United States. Despite known health disparities, there continues to be limited research to develop an evidence base for diagnosing and intervening to improve health conditions for children in foster care.6 One identified obstacle to recruitment is obtaining informed consent, the legal requirement for understanding and voluntary agreement to participate in research. Foster youth do not have a traditional parent or guardian and instead have many adults playing different roles in their lives, including their children’s services caseworker, their foster caregiver, their biological parent, their court-appointed special advocate or guardian ad litem (GAL), and their judge or magistrate. Each plays a role in decision-making for the child and could participate in the informed consent process…

Parental Understanding of Research Consent Forms in the PICU: A Pilot Study
Shira Gertsman, Katharine O’Hearn, Jess Gibson, Kusum Menon
Pediatric Critical Care Medicine, 28 February 2020
Abstract
Objectives
To describe legal guardians’ understanding of key concepts in a research consent form presented within 24 hours of their child’s admission to the [Paediatric Intensive Care Unit] PICU and to explore legal guardians’ opinions of the format (language, length) of the consent form and the overall consent process.
Design
Single-center, exploratory pilot study.
Setting
PICU at a tertiary-care hospital in Canada.
Subjects
Forty-one English- and French-speaking legal guardians of children less than 18 years old, who had been admitted to the PICU within the past 24 hours and were expected to stay at least 48 hours, between October 2018 and February 2019.
Interventions
The consent form from a previous PICU trial was given and explained to legal guardians within 24 hours of their child’s admission to the PICU.
Measurements and main results
Legal guardians’ understanding of key concepts in the consent form was evaluated using a questionnaire the day after the form was explained, and opinions were collected verbally and using an additional survey. The median number of questions answered incorrectly was three of seven (interquartile range = 2-4). Participants best understood the topic of the study (5% incorrect), but 80% of participants were unable to recall a single risk. The median rating of the language in the form was five of five (very easy to understand; interquartile range = 4-5), and 88% of participants said it was a reasonable length.
Conclusions
Despite positive opinions of the consent form, most legal guardians did not understand all key components of the consent information provided to them orally and in writing within 24 hours of their child’s PICU admission. Future studies are required to determine barriers to understanding and explore alternative approaches to obtaining consent in this setting.

Consent for Research on Violence against Children: Dilemmas and Contradictions
Concept Paper
Paula Cristina Martins, Ana Isabel Sani
Societies, 5 February 2020
Open Access
Abstract
The increasing visibility of violence involving children has led to a recognition of the need to research its underlying dynamics. As a result, we now have a better understanding of the complexities involved in this kind of research, associated with children’s developmental characteristics and social status, exposure to violence, and compromised parenting of caregivers. This paper discusses the issues raised by parental consent in research on violence against children, specifically the dilemma of children’s rights to participation and protection, and proposes changes in research practice in this domain.

Admission and discharge criteria for adolescents requiring inpatient or residential mental health care a scoping review
Systematic Reviews
Nicola Evans, Deborah Edwards, Judith Carrier
JBI Evidence Synthesis, February 2020; 18(2) pp 275-308
Open Access
Abstract
Objective
This scoping review sought to locate and describe criteria relating to admission to and discharge from inpatient mental health care for adolescents aged 11 to 19 years in the literature.
Introduction
In the United Kingdom (UK) and internationally, it is estimated that one in 10 children and adolescents has a diagnosable mental health problem. Children and adolescents with the highest levels of need are cared for in hospital, but there is a high demand for beds and a general lack of agreement regarding the criteria for admission to, and discharge from, such units.
Inclusion criteria
We considered research studies that focused on criteria for admission to and discharge from inpatient mental healthcare units for adolescents aged 11 to 19 years. We included all quantitative and qualitative research designs and text and opinion papers.
Methods
We searched MEDLINE, Embase, PsycINFO, CINAHL, ERIC, British Nursing Index, Applied Social Sciences Index and Abstracts, ProQuest Dissertations and Theses, the Cochrane Central Register of Controlled Trials, OpenGrey, EThOS and websites of professional organizations for English language citations from 2009 to February 2018. Potentially relevant citations were retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information. Full texts of selected citations were assessed in detail against the inclusion criteria by two independent reviewers. Findings were extracted directly into tables accompanied by a narrative summary relating to the review objectives.
Results
Thirty-five citations were included: quantitative research studies (n = 18), qualitative research studies (n = 1), and textual and opinion publications (n = 16). Of the quantitative research studies, 16 used a retrospective cohort design using case note reviews and two were prospective cohort studies. The qualitative study used interviews. The research studies were conducted in nine countries: USA (n = 7), UK (n = 3), New Zealand (n = 2), Israel (n = 2), Canada (n = 1), Norway (n = 1), Ireland (n = 1), Greece (n = 1) and Turkey (n = 1). The 16 textual and opinion publications included book chapters (n = 3), reviews (n = 3), policy and guidance documents (n = 3), reports (n = 3) and service specifications (n = 4). The majority of these were published in the UK (n = 10), with the remainder published in Ireland (n = 2), Australia (n = 2), and USA (n = 2). Research was conducted across a variety of settings including child and adolescent mental health service inpatient and outpatient units, emergency departments and adult psychiatric units. Length of stay, where recorded, ranged from < 1 day to 351 days. Several categories emerged from the data: type of admission process, referral or point of access, reasons for admission to inpatient mental health care, assessment processes, criteria for discharge and reasons for non-admission.
Conclusion
There is little evidence identifying which behavioral or symptomatic indicators suggest that admission is required, beyond retrospective identification of diagnoses attributed to adolescents who become inpatients. The threshold of severity of risk or need is not currently articulated. No studies were identified that drew on the perspectives of adolescents and their families or carers regarding criteria warranting admission to inpatient mental health care, which indicates an important area for future investigation.