Consent in paediatric neurosurgery: adequacy of documentation and parental perspectives
Adikarige H. D. Silva, Haren Wijesinghe, Nilesh Mundil, William Lo, A. Richard Walsh, Guirish A. Solanki, Desiderio Rodrigues
Child’s Nervous System, 9 July 2019; pp 1–7
Original Article
Abstract
Introduction
Consenting paediatric patients for surgical procedures remains inherently unique in that it is underpinned by principles such as parental responsibility, assessment of the child’s capacity to consent, and adherence to national/legal guidelines. Quality record keeping is an important objective evidence to demonstrate the highest standards of medical care provided to our patients. The consent form is a crucial medical record encapsulating the attainment of informed consent from a parent/guardian for performing a procedure on their child. We aimed to prospectively evaluate the consenting process in our department to assess adequacy of documentation and parental perspectives.
Methods
A prospective study using qualitative descriptive design was conducted with parents of 50 children requiring neurosurgical procedures over a 3-month period.
Results
All patients understood the primary diagnosis and type of surgery. Procedure-specific risks were understood by 98% and 84% could remember the mentioning of general risks of surgery. Only a minority of parents (24%) could recollect that alternative options of management including no treatment were discussed. In cases where relevant, laterality was only documented in 56% of consent forms. All patients felt that an informed decision regarding consent to surgery was made. However, 12% suggested areas where further improvement could be made in the timing of consent and the way information could be better provided.
Discussion
Consent is more than a signature on a form. It provides objective evidence of a shared decision-making process between the surgeon, patient, and their parent/guardian. Our initial study highlights multiple areas for improvement.

Gavi, NEC, and Simprints to deploy world’s first scalable child fingerprint identification solution to boost immunisation in developing countries [PRESS RELEASE]
gavi.org, 6 June 2019
Excerpt
Gavi, the Vaccine Alliance, NEC Corporation, and Simprints Technology Ltd. have signed a memorandum of understanding on the use of biometrics to improve immunisation coverage in developing countries.

Despite enormous progress over the past two decades, there are still approximately 20 million children who do not receive a basic course of vaccines worldwide, leaving them exposed to some of the world’s deadliest diseases.

One key cause is the fact that only half of all children under 5 in sub-Saharan Africa are currently registered at birth, leaving many without an official identity. This makes it difficult for health practitioners to ensure these infants get the vaccines they need at the right time.

Guided by Gavi’s experience and expertise in immunisation, this new project will combine Simprints’ biometric fingerprint technology and NEC’s reinforced authentication engine to help create digital identities for children 1-5 years of age and boost immunisation coverage in developing countries.

This new partnership will deploy the world’s first scalable fingerprint identification solution to give children aged 1-5 a digital ID linked to an accurate, complete medical record. All biometric records will be stored securely by Simprints, a UK-based non-profit social enterprise, after caregivers give informed consent to having their children’s biometric data taken…

Editor’s note: The Foundation has expressed concern to GAVI about the management and potential misuse of this digital ID system beyond its intent to support infant immunization.

Reflections on informed consent by children and adolescents for the provision of clinical healthcare services
Barcia M, Zunini C
Uruguayan Medical Journal, 2019; 35(2) pp 146-150 
Abstract
The Convention on the Rights of the Child has established a change in the concept of childhood. Children become subjects of rights and protection instead of being objects of society. The health contexts, as a sphere for social processes needs to keep pace with this paradigm. It is necessary for children and adolescents to participate in the making of decisions affecting their health in the clinical context. The study aims to discuss the specific characteristics of informed consent in children and adolescents within the context of the provision of healthcare services from the paradigm proposed by the Convention of the Rights of the Child of 1989. Informed consent as an expression of will, needs to meet three requirements to be valid: competence to make autonomous decisions, information and freedom. The main challenge of the health team lies in defining the moment when a child and adolescent may grant a valid consent. This study will reflect on the characteristics of informed consent within the context of the provision of health care services. The health team must guarantee the participation of children and adolescents in the making of decisions, understanding autonomy is gradually acquired.

Editor’s note: This is a Spanish language publication.

The Informed Consent in Pediatrics – A Child’s Right
Dana Elena Mindru, Mioara Calipsoana Matei, Aurica Rugina, Irina Mihaela Ciomaga, N. Nistor, Laura Florescu
The Medical-Surgical Journal, 29 March 2019; 123(1)
Abstract
Consent signifies the patient’s knowingly authorization of a medical intervention. Revealing the truth about the patient’s condition refers to the provision of information by the physician regarding the diagnosis and the treatment, as well as their understanding by the patient. His or her decision-making capacity refers to the ability of understanding the data that have been provided. The independent decision refers to the patient’s right to make a free decision regarding his or her treatment, without constraint or manipulation. Informed consent is one of the most sensitive issues of the physician-patient, researcher-subject relationship. Minors do not have the capacity of independent decision; therefore, the decision by substitution given by parents or legal representatives is required. The minor child’s consent to the medical treatment and pediatric scientific research expresses itself under the form of assent, which is valid starting with the age of 14. Doctors should ask for parental consent before medical interventions (except in cases of emergency, when parents cannot be contacted). From a practical standpoint, when it comes to obtaining a valid consent, it is useful to make a distinction between the problem-solving process and the decision-making process. The permission given by parents includes all standard elements of informed consent. In each case, the doctor has to make sure that he or she has a valid consent because, in legal terms, treating a patient without his or her consent is a crime, while treatment based on inadequate consent constitutes negligence.

Editor’s note: We note that this is a Romanian publication and therefore the abstract noting assent beginning at age 14 is local to the Romanian context.

Informed Consent for Bedside Procedures in Pediatric and Neonatal ICUs: A Nationwide Survey
Arnolds, Marin M., Feltman, Dalia M.
Pediatric Critical Care Medicine, 5 April 2019
Abstract
Objectives
Primary objectives were to discover current practices of informed consent for bedside procedures in the PICU and neonatal ICU and how trainees learn to obtain consent. We also attempted to gauge if program directors felt that one method of consent was subjectively superior to another in the way it fulfilled established ethical criteria for informed consent.
Design 
An online anonymous survey. Participants were asked about how and by whom informed consent is currently obtained, training practices for fellows, and attitudes about how different consent methods fulfill ethical criteria.
Setting 
All U.S. fellowship programs for neonatology (n = 98) and pediatric critical care (n = 66) in the fall of 2017.
Subjects
Neonatal and pediatric critical care fellowship program directors.
Interventions
None.
Measurements and Main Results 
The overall response rate was 50% (82 of 164). The most common method for obtaining consent in both ICU types was via a written, separate (procedure-specific) consent (63% neonatal ICUs, 83% PICUs); least common was verbal consent (8% neonatal ICUs and 6% PICUs). Fellows were reported as obtaining consent most often (91%), followed by mid-level practitioners (71%) and residents (66%). Residents were one-fifth as likely to obtain consent in the PICU as compared with the neonatal ICU. Sixty-three percent of fellowship directors rated their programs as “strong” or “very strong” in preparing trainees to obtain informed consent. Twenty-eight percent of fellowship directors reported no formal training on how to obtain informed consent.
Conclusions
Most respondents’ ICUs use separate procedure-specific written consents for common bedside procedures, although considerable variability exists. Trainees reportedly most often obtain informed consent for procedures. Although most fellowship directors report their program as strong in preparing trainees to obtain consent, this study reveals areas warranting improvement.

HPV vaccination and sexual health in France: Empowering girls to decide
Hervé Lefevre, Stéphanie Samain, Nour Ibrahim, Christine Fourmaux, Anne Tonelli, Sébastien Rouget, Emmanuelle Mimoun, Renaud De Tournemireci, Marie Devernav, Marie Rose Morp, Jonathan Lachal
Vaccine, 22 March 2019; 37(13) pp 1792-1798
Objective
Vaccination coverage against HPV in France is among the lowest in the industrialized world, although the public authorities have recently become aware of this issue. Few studies have looked at teenaged girls’ representations of this vaccination, even though they are the most concerned by it. This qualitative study explored the experiences and representations of HPV vaccination by adolescent girls seeing doctors at least occasionally.
Study Design
We used a written essay question to explore this issue among 101 adolescent girls at six urban medical centers and a semi-structured interview to discuss it in further depth with five of them. The analysis was lexicometric (ALCESTE®) and phenomenological (Interpretative Phenomenological Analysis).
Results
These results are organized around four superordinate themes: the teenage girls’ factual knowledge about this vaccine, their motives for and obstacles to vaccination, their involvement in this decision, and finally the need for information about and solutions to this issue.
Conclusions
Teenage girls know little about this vaccine and are more sensitive to the emotional discourse that surrounds it than to rational knowledge about it. The requirement for parental authorization for this vaccine reinforces the girls’ lack of investment. Vaccination programs should integrate the HPV vaccine more thoroughly into general prevention concerning sexual health and should send a strong signal by offering minors anonymous vaccination free of charge, as is already the case in France for requests for contraception, the morning-after pill, elective abortion, and screening and treatment of sexually transmitted infections.

Communication with children and adolescents about the diagnosis of their own life-threatening condition
Alan Stein, Louise Dalton, Elizabeth Rapa, Myra Bluebond-Langner, Lucy Hanington, Kim Fredman Stein, Sue Ziebland, Tamsen Rochat, Emily Harrop, Brenda Kelly, Ruth Bland
The Lancet, 16 March 2019; 393(10176) pp 1150-1163
Summary
When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. Evidence-based guidelines are urgently needed for all health-care settings, from tertiary referral centres in high-income countries to resource limited environments in low-income and middle-income countries, where rates of child mortality are high. We place this Review in the context of children’s developing understanding of illness and death. We review the effect of communication on children’s emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families, and health-care professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents, and caregivers, generated from a workshop of international experts.