Giving Due Weight to Children and Young People in Australian Policy Making
Meaghan Vosz, Anne Graham, Mark Hughes
The International Journal of Children’s Rights, 17 December 2024
Abstract
While Article 12 of the Convention on the Rights of the Child is often cited to assure children’s right to express their views freely in all matters affecting them, little is known about the practices associated with giving due weight to their views in policy-making that impacts their lives. This paper reports on critical-participatory research exploring the practices of more than 100 policy actors, conducted with five young co-researchers with lived experience of Australian child protection and out-of-home care systems. Practices associated with giving due weight included: involving children as policy actors, listening, giving feedback and reporting back, and amplifying their views. Practices were constrained by discourses of authenticity/tokenism; bureaucracy and jurisdiction; the attribution of expertise; and limited funding and time. Research demonstrated opportunities for realising Article 12 through intergenerational dialogue and valuing the lived experience and agency of young people as policy actors.

A New Approach for Investigating Children’s Participation Rights in Early Childhood Education: Listening to Voices in Interaction for Participation (LViIP)
Cynthia Hicban, Maryanne Theobald, Julia Mascadri
The International Journal of Children’s Rights, 17 December 2024
Abstract
   Research into children’s participation rights has largely focused on the challenges for early childhood educators to navigate children’s participation rights enactment. The aim of this article is to show how the enactments of children’s participation rights in an educational setting can be identified using a new approach, Listening to Voices in Interaction for Participation (LViIP).

LViIP is based on Lundy’s (2007) conceptualisation of Article 12(1) and combines with conversation analysis (ca) to identify how rights enactment sequentially unfolds and how the interactants mobilise (or gatekeep) opportunities for children to have a say.

A step-by-step worked example of LViIP shows in detail how participatory approaches by educators and children are built in early childhood education, thus demonstrating which interactional practices contribute towards the co-construction of children’s participation rights and how early childhood professionals can listen, be and do as duty-bearers of children’s rights in their daily practice.

Demonstrating the Electronic Consent Process for Emergency Surgical Patients
David Fellows, Giles Bond-Smith
Cureus, 25 October 2024
Abstract
Introduction
Patient consent for surgery is a vital part of the surgical pathway from both a patient safety and medicolegal point of view. Improvement in documenting the full consent process in the electronic patient record (EPR), alongside the standard completion of the paper consent form in a surgical emergency unit (SEU), to comply with the Montgomery ruling of informed consent, has become of paramount importance. The aim of this project was to improve the documentation of the full consent process by creating an electronic template that was easy for the consenting clinician to use and provided a robust record of the bespoke consent process for the individual patient.
Methods
In July 2020, clinicians in the SEU were asked to begin documenting the patient’s consent process in the EPR. The number of documented electronic consent processes (ECPs) of patients who underwent emergency general surgery during a two-week period was then captured between October and November 2020. The second cycle involved creating a single consent template, allowing the ECP to be easily documented in one template for all the common emergency surgery operations. All clinicians who were responsible for surgical consenting were asked to use the electronic template as part of the consent process. The rate of electronic consent was recorded over a second two-week period, six months later, in May 2021.
Results
From the first cycle, 78 patients were identified as undergoing emergency surgery, of which 13% (N=10) had an electronic entry regarding the consent process fully documented and personalised to the patient. From the second cycle, 64 patients were identified. The rate of documented ECPs increased to 77% (N=49).
Conclusion
This project has successfully improved the electronic demonstration of a consent process, bespoke to the individual, in accordance with the Montgomery ruling, by implementing an easy-to-use template on EPR. This is a significant step towards full digital consent in the future.

Ethical issues in vaccine trial participation by adolescents: qualitative insights on family decision making from a human papillomavirus vaccine trial in Tanzania
Lucy Frost, Ms Tusajigwe Erio, Hilary Whitworth, Ms Graca Marwerwe, Richard Hayes, Kathy Baisley, Silvia de SanJosé, Deborah Watson-Jones, Kirstin Mitchell
BMC Medical Ethics, 20 November 2024
Open access
Abstract
Background
Research in children is essential for them to benefit from the outcomes of research but involvement must be weighed against potential harms. In many countries and circumstances, medical research legally requires parental consent until the age of 18 years, with poorly defined recommendations for assent prior to this. However, there is little research exploring how these decisions are made by families and the ethical implications of this.
Aim
To explore key ethical debates in decision-making for participation of children and adolescents in a human papillomavirus (HPV) vaccine trial.
Methods
Semi-structured interviews were undertaken with Tanzanian girls (aged 9–16 years) who had participated in an HPV vaccine trial (n = 13), their parents or guardians (n = 12), and girls together with their parents (in paired parent-child interviews) (n = 6). The interviews were analysed using thematic analysis. Interview data came from a qualitative acceptability study undertaken as part of the Dose Reduction Immunobridging and Safety Study of Two Human Papillomavirus (HPV) Vaccines in Tanzanian Girls (DoRIS) trial.
Results
Girls and parents desired collaborative decision-making, with parents ultimately making the decision to consent. However, girls wanted a larger part in decision-making. Decisions to consent involved many people, including extended social networks, the trial team, media outlets and healthcare professionals and this resulted in conflicts to be negotiated. Deciding where to place trust was central in participants and parents considering decisions to consent and overcoming rumours about trial involvement.
Conclusions
Existing models of decision-making help to understand dynamics between parents, adolescents and researchers but neglect the important wider social impacts and the fundamental nature of trust. Children’s roles in discussions can be evaluated using the principles of consent: autonomy, freedom and information. Concepts such as relational autonomy help to explain mechanisms families use to negotiate complex consent decisions. Whilst interviewees supported the maintenance of legal parental consent, researchers must design consent processes centring the child to ensure that whole family decision-making processes are supported.

Tools for effective patient education to manage outcome expectations in paediatric facial reanimation: a systematic review
Systematic Review
Dimitris Reissis, Cédric Zubler, Edel de Buitleir, Sam Brown, Jonathan Leckenby, Adriaan Grobbelaar
Plastic and Aesthetic Research, 30 October 2024
Open Access
Abstract
Aim
Informed consent for paediatric facial reanimation requires effective patient/parent education and involvement in a shared decision-making (SDM) process to help set their expectations and understanding from the outset. No article in the current literature has systematically reviewed the available tools for facilitating effective patient/parent education and the validity of informed consent in the context of paediatric facial reanimation.
Methods
A systematic literature review was undertaken, following the Preferred Reporting Items of Systematic Reviews and Meta-analyses (PRISMA) 2020 guidelines. MEDLINE via PubMed, Embase and Cochrane Library were searched and the results screened and reviewed in accordance with pre-defined inclusion and exclusion criteria.
Results
The initial search yielded 478 articles, of which only 4 fulfilled the study’s inclusion criteria. One cohort study evaluated qualitative feedback from patients and their relatives participating in a family education and support day for paediatric facial palsy, while another article from the same group reviewed the readability of online education resources. The remaining two articles represented educational reviews focusing on treatment and patient education based on expert opinion without providing original outcome data.
Conclusion
There is a paucity of evidence regarding patient/parent education to support the informed consent process for children undergoing paediatric facial reanimation. There remains a need for further resources and platforms to be developed that may support children and their parents in engaging in a SDM process, setting appropriate expectations, and providing valid informed consent for their surgery.