The Australian New Zealand Consortium in Children, Adolescents, and Young Adults Oncofertility action plan.

International and national oncofertility networks, including the US-led Oncofertility Consortium, FertiProtekt, and the Danish Network, have played pivotal roles in advancing the discipline of oncofertility over the last decade. Many other countries lack a shared approach to pediatric oncofertility health service delivery. This study aims to describe baseline oncofertility practices at Australian New Zealand Children's Haematology/Oncology Group centers in 2019-2021, describe binational priorities for care, and propose a 5-year action plan for best practice to be implemented by the newly formed Australian New Zealand Consortium in Children, Adolescents, and Young Adults (CAYA) Oncofertility (ANZCO).

Gillick competence: an inadequate guide to the ethics of involving adolescents in decision-making.

Developmentally, adolescence sits in transition between childhood and adulthood. Involving adolescents in their medical decision-making prompts important and complex ethical questions. Originating in the UK, the concept of Gillick competence is a dominant framework for navigating adolescent medical decision-making from legal, ethical and clinical perspectives and is commonly treated as comprehensive. In this paper, we argue that its utility is far more limited, and hence over-reliance on Gillick risks undermining rather than promoting ethically appropriate adolescent involvement. We demonstrate that Gillick only provides guidance in the limited range of cases where legal decisional authority needs to be clarified. The range of cases where use of Gillick actually promotes adolescent involvement is narrower still, because several features must be present for Gillick to be enacted. Each of these features can, and do, act as barriers to adolescent involvement. Within these limited situations, we argue that Gillick is not specific or strong enough and is reliant on ethically contestable principles. Moreover, in most situations in adolescent healthcare, Gillick is silent on the ethical questions around involving adolescents. This is because it focuses on decisional authority-having the final say in decision-making-which is one small subset of the many ways adolescents could be involved in decision-making. The implication of our analysis is that use of Gillick competence tends to limit or undermine adolescent involvement opportunities. We propose that those working with adolescents should be judicious in seeking Gillick's guidance, instead drawing on and developing alternative frameworks that provide a comprehensive model for adolescent involvement.

Ethical challenges faced by healthcare workers in pediatric oncology care during the COVID-19 pandemic in Australia.

OBJECTIVE: This qualitative study examined ethical challenges reported by healthcare professionals (HCPs) working in a large Australian pediatric oncology center during a period of strict COVID-19 restrictions. METHODS: We conducted semi-structured interviews with 21 HCPs who provided pediatric cancer care during the pandemic in 2020, during strict lockdown periods. Interviews examined the difficulties they faced, as well as their own ethical evaluation of the impact of COVID-19 policies on oncology care. Data were analyzed using inductive content analysis and thematic analysis. RESULTS: HCPs faced several challenges, primarily originating from hospital restrictions, which led to changes in usual clinical practices. These challenges included delivering care with personal protective equipment (PPE), the impact of a one-parent visitation policy, changes in psychosocial and allied health services, and COVID-19 swabbing policies. Overall, there was consensus from participants that hospital restrictions were justified and, while difficult, HCPs simply had to provide the best care possible given the circumstances. However, participants described decreased capacity to deliver holistic patient care and, in some instances, a tendency to avoid ethical reflection. Lastly, there was a consistent theme of shame and sense of responsibility underlying some participants' anxiety around inadvertently transmitting COVID-19 to immunocompromised patients. CONCLUSION: Our findings show that many staff felt unease at the disruptions in patient care due to COVID-19 restrictions. Some HCPs indicated a degree of moral distress, with a possibility of moral injury among some HCPs. A focus on ethical recovery could assist in preventing any ongoing difficulties among HCPs because of their experiences.

Understanding adolescent girls' and young women's health-seeking for female genital cosmetic surgery: How can clinicians help their patients?

AIM: This study aimed to understand why adolescent girls and young women (AGYW) would seek consultation with a health professional about genital appearance concerns and/or request female genital cosmetic surgery (FGCS). The information derived from these participant interviews can inform clinical practice and help clinicians better navigate consultations with young women and girls requesting FGCS. METHODS: A qualitative exploratory study was conducted using in-depth, semi-structured interviews with AGYW (n = 11) in Victoria, Australia. Participants comprised 11 AGYW who sought consultation with a health professional when aged 13-19 years for genital appearance concerns and/or requests for FGCS. Key themes were identified using a thematic analysis approach. RESULTS: Of 11 participants, five had undergone FGCS between the ages of 13 and 23 years. Key reasons for seeking a consultation identified in the interviews included: ideas about what 'normal' genitals look like, experiences of sexual harassment and bullying, and concerns about genital appearance developing before sexual debut. CONCLUSIONS: It is important to understand why AGYW want to access these procedures, given the risks involved, and that FGCS is not recommended by paediatric specialist organisations. Understanding why AGYW seek consultation for FGCS can help inform clinical practice, and the views expressed by participants in this study can help clinicians who work in this area to better support their patients.

Parental perspectives on the clinician's approach to serious illness communication: A qualitative study.

OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children's Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors. RESULTS: Eleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: "Approaches clinicians can use to lay the foundation for quality communication" including checking in, validation, aligning with hopes and a commitment to listening and being present; and "Approaches clinicians can use to aid the delivery of information" including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician's experience. SIGNIFICANCE OF RESULTS: This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents' needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.

The scope of ethical dilemmas in paediatric nursing: a survey of nurses from a tertiary paediatric centre in Australia.

BACKGROUND: No previous study has provided evidence for the scope and frequency of ethical dilemmas for paediatric nurses. It is essential to understand this to optimise patient care and tailor ethics support for nurses. RESEARCH AIM: The aim of this study was to explore the scope of nurses' ethical dilemmas in a paediatric hospital and their engagement with the hospital clinical ethics service. RESEARCH DESIGN: This study used a cross-sectional survey design. PARTICIPANTS AND RESEARCH CONTEXT: Paediatric nursing staff in a tertiary paediatric centre in Australia completed an online survey asking about their exposure to a range of ethical dilemmas and their knowledge of the clinical ethics service. Analysis used descriptive and inferential statistics. ETHICAL CONSIDERATIONS: Ethical approval was granted from the hospital research committee. The survey was anonymous, and no identifying details of participants were collected. RESULTS: Paediatric nurses experienced a wide range of ethical dilemmas frequently, both in the intensive care and general areas. Knowledge and use of the clinical ethics service was poor and the most frequent challenge for nurses in managing dilemmas was feeling powerless. CONCLUSION: There is a need to recognise the moral burden of ethical dilemmas for paediatric nurses in order to foster ethical sensitivity, and to provide adequate support to improve care and mitigate nursing moral distress.

Truth-telling to the seriously ill child - Nurses' experiences, attitudes, and beliefs.

BACKGROUND: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child's bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring. METHODS: A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. ETHICAL CONSIDERATIONS: As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. RESULTS: Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. CONCLUSION: A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios.

Telling the truth to seriously ill children: Considering children's interests when parents veto telling the truth.

How should clinicians respond when parents will not allow their child to know the truth about their medical condition and treatment? There is wide consensus amongst clinicians and ethicists that children should be given "honest" information delivered in a developmentally appropriate manner. However, the basis in ethical theory is not clear, especially for pre-adolescents. These children are old enough to understand some information, but are not yet "mature minors" capable of making their own health care decisions. We take the position that thinking in terms of a child's "right to know" is not the most helpful in dealing with the ethical complexity of these situations. We propose that questions of truth-telling are best addressed in terms of how a child's interests are promoted or set back by being told the truth. Our first step is to give an account of the concept of children's interests in general. Then we relate that account specifically to truth-telling. In doing so, we use a relatively straightforward hypothetical but realistic case, in order to illustrate how ethical deliberation using interests would proceed. The case is not intended to be particularly contentious or difficult, so that the focus is on the nature of the ethical reasoning, rather than any complexities of the case.

Decision-making approaches for children with life-limiting conditions: results from a qualitative phenomenological study.

BACKGROUND: For children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself. METHODS: This qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician. RESULTS: Two key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: (1) there is a spectrum of paediatricians' roles and responsibilities in decision-making, and (2) the specific influences on paediatricians' choice of approach for end-of-life decisions. In relation to (1), analysis showed four distinct approaches: (i) non-directed, (ii) joint, (iii) interpretative, and (iv) directed. In relation to (2), the common factors were: (i) harm to the child, (ii) possible psychological harm to parents, (iii) parental preferences in decision-making, and (iv) resource allocation. CONCLUSIONS: Despite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians' considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making. TRIAL REGISTRATION: Not applicable.

Mild matters: parental insights into the conundrums of managing mild congenital hearing loss.

OBJECTIVE: To explore and describe parental experiences related to the management of mild bilateral congenital hearing loss in children. DESIGN: Using qualitative methods, we conducted semi-structured interviews with parents/caregivers until saturation of themes was achieved. We analysed transcripts using inductive content analysis. STUDY SAMPLE: Caregivers of children under 3-years-old with mild bilateral sensorineural hearing loss. RESULTS: We interviewed 12 parents. Parental perception of advice regarding hearing aid fitting was varied; almost all children were offered hearing aids. Perceived positives related to hearing aids: feeling empowered that action has been taken; improvements in the child's hearing perception and; facilitation of behavioural management. Perceived negatives of hearing aid use: difficulties with compliance resulting in parental frustration and guilt, damage/loss of equipment, discomfort, parental discord, altered quality of natural sound and potential bullying/stigma. Some parents were ambivalent about the effect of the hearing aids. Where hearing aids were offered and not fitted, there was significant ongoing uncertainty, and the family carried the burden of their decision. CONCLUSIONS: There was a wide variation in perceived advice regarding early hearing aid fitting in children with mild bilateral hearing loss. We identified parental perceptions of positive/negative impacts of hearing aid fitting and potential perceived harms from not fitting.

Clinicians' perceptions of the Australian Paediatric Mental Health Service System: Problems and solutions.

OBJECTIVES: Despite substantial investment by governments, the prevalence of mental health disorders in developed countries remains unchanged over the past 20 years. As 50% of mental health conditions present before 14 years of age, access to high-quality mental health care for children is crucial. Barriers to access identified by parents include high costs and long wait times, difficulty navigating the health system, and a lack of recognition of the existence and/or severity of the child's mental health disorder. Often neglected, but equally important, are clinician views about the barriers to and enablers of access to high-quality mental health care. We aimed to determine perspectives of Australian clinicians including child and adolescent psychiatrists, paediatricians, psychologists and general practitioners, on barriers and enablers within the current system and components of an optimal system. METHODS: A total of 143 clinicians (approximately 35 each of child and adolescent psychiatrists, paediatricians, child psychologists and general practitioners) from Victoria and South Australia participated in semi-structured phone interviews between March 2018 and February 2019. Inductive content analysis was applied to address the broad study aims. FINDINGS: Clinician-identified barriers included multi-dimensional family factors, service fragmentation, long wait times and inadequate training for paediatricians and general practitioners. Rural and regional locations provided additional challenges but a greater sense of collaboration resulting from the proximity of clinicians in rural areas, creating an opportunity to develop support networks. Suggestions for an optimal system included novel ways to improve access to child psychiatry expertise, training for paediatricians and general practitioners, and co-located multidisciplinary services. CONCLUSION: Within the current mental health system for children, structural, training and workforce barriers prevent optimal access to care. Clinicians identified many practical and systemic ideas to improve the system. Implementation and evaluation of effectiveness and cost effectiveness of these ideas is the next challenge for Australia's children's mental health.

Dissonance in views between parents and clinicians of children with serious illness: How can we bridge the gap?

Parents of children with serious illness must find a tolerable way of living each day, while caring for their child and making decisions about their treatments. Sometimes clinicians worry that parents do not understand the seriousness of their child's illness, including possible death. This can lead to tension, disagreement and even conflict. Such situations continue to occur despite expanding literature to help clinicians understand drivers of parental behaviour and decision-making. Some of this literature relates to the role of hope and how parents characterise being a 'good parent'. This article will summarise some of the applications and limitations of the hope and 'good parent' literature, as well as frameworks to understand grief and loss. We propose, however, that there is at least one missing link in understanding potential dissonance in views between parents and clinicians. We will make a case for the importance of a richer understanding about if, and how, parents 'visit' the 'reality' that clinicians wish to convey about their child's diagnosis and prognosis. We propose that clinician understanding about the benefits and burdens of 'visiting' this 'reality' for an individual family may help guide conversations and rapport, which in turn may influence decision-making with benefits for the child, family and clinicians.

A practical and ethical toolkit for last-minute refusal of anesthetic in children.

Children's fear of a procedure, including the anesthetic, is a common issue that operating theatre staff face. This fear is generally mitigated by preesthetic preparation and information sharing. Last-minute refusal of a procedure creates unique difficulties for the anesthetist and proceduralist. Refusal for a procedure raises issues of whether the dissent is binding, and if not, how best to get the child to theatre without creating moral injury. In this case review of a young adolescent who refuses to go to the operating theatre, we explore practical and ethical options to resolve the situation. We discuss respect for persons (including assent and consent), best interests, truth-telling, harm minimization, and restraint. The importance of a postevent debrief is discussed. We also assess the value of a clinical ethics service with team members embedded in clinical teams.

Balancing health worker well-being and duty to care: an ethical approach to staff safety in COVID-19 and beyond.

The COVID-19 pandemic has highlighted the risks that can be involved in healthcare work. In this paper, we explore the issue of staff safety in clinical work using the example of personal protective equipment (PPE) in the COVID-19 crisis. We articulate some of the specific ethical challenges around PPE currently being faced by front-line clinicians, and develop an approach to staff safety that involves balancing duty to care and personal well-being. We describe each of these values, and present a decision-making framework that integrates the two. The aim of the framework is to guide the process of balancing these two values when staff safety is at stake, by facilitating ethical reflection and/or decision-making that is systematic, specific and transparent. It provides a structure for individual reflection, collaborative staff discussion, and decision-making by those responsible for teams, departments and other groups of healthcare staff. Overall the framework guides the decision maker to characterise the degree of risk to staff, articulate feasible options for staff protection in that specific setting and identify the option that ensures any decrease in patient care is proportionate to the increase in staff well-being. It applies specifically to issues of PPE in COVID-19, and also has potential to assist decision makers in other situations involving protection of healthcare staff.

Forever young? The ethics of ongoing puberty suppression for non-binary adults.

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression (OPS) to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that (1) the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; (2) there are additional equity-based reasons to offer OPS to non-binary adults as a group; and (3) the ethical defensibility of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient's request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual's context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results.

Treatment limitation and advance planning: Hospital-wide audit of paediatric death.

AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 2016, and results were compared to 2007 data from our centre. χ2 tests were used for comparisons. RESULTS: A total of 101 deaths occurred in the inpatient setting in 2015-2016. Most deaths followed WWMT (88/101, 87%) and occurred in children with pre-existing chronic conditions (85/101, 85%). There was a shift to earlier discussions with parents regarding WWMT compared to 10 years prior. Cases where discussions began prior to the last admission increased from 4 to 19% (P = 0.004). There was increased paediatric palliative care (PPC) involvement (10 vs. 37%, P < 0.001), and a slightly greater proportion of children died outside of intensive care (16 vs. 22%, P = 0.25). In 2015-2016, subgroup analysis showed that children who died as inpatients but outside of intensive care were 76% more likely to have PPC involved than those who died in intensive care (P < 0.001). Their families were 51% more likely to have discussed WWMT with medical staff before the last admission (P < 0.001). CONCLUSIONS: The last decade has seen an increase in PPC involvement and advance discussions around WWMT at our centre. Both of these are associated with death outside of intensive care.

After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child.

AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision-maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death. CONCLUSION: Results suggest that parents can live well with the ELDs they made for their child. End-of-life decision-making knowledge is confirmed and extended, and clinical support for parents informed.

Protocol for a single patient therapy plan: A randomised, double-blind, placebo-controlled N-of-1 trial to assess the efficacy of cannabidiol in patients with intractable epilepsy.

AIM: This paper describes the use of the single patient therapy plan (SPTP). The SPTP has been designed to assess the efficacy at an individual level of a commercially available cannabinoid product, cannabidiol, in reducing seizure frequency in paediatric patients with intractable epilepsy. METHODS: The SPTP is a randomised, double-blind, placebo-controlled N-of-1 trial designed to assess the efficacy of treatment in a neurology outpatient setting. The primary objective of the SPTP is to assess the efficacy of cannabidiol in reducing seizure frequency in each patient with intractable epilepsy, with change in seizure frequency being the primary outcome of interest. The analysis adopts a Bayesian approach, which provides results in the form of posterior probabilities that various levels of benefit (based on the primary outcome measure, seizure frequency) have been achieved under active treatment compared to placebo, accompanied by decision rules that provide thresholds for deciding whether treatment has been successful in the individual patient. The SPTP arrangement is most accurately considered part of clinical practice rather than research, since it is aimed at making clinical treatment decisions for individual patients and is not testing a hypothesis or collecting aggregate data. Therefore, Human Research Ethics Committee approval was considered not to be required, although it is recommended that hospital Clinical Ethics Committees provide ethical oversight. CONCLUSION: These SPTP resources are made available so that they may inform clinical practice in the treatment of severe epilepsy or adapted for use in other conditions.

Simulation-Based Research: A Scoping Review.

There is an increasing interest in using simulation in qualitative research outside evaluation of educational-based activities. To examine how data from simulation has been generated and used in qualitative research, we conducted a scoping review of research topics and data collection and analysis processes reported in qualitative research using simulation in the research method. Of the 665 articles that involved qualitative inquiry, 46 involved simulation in research independent from simulation-based education. Phenomena explored included communication and clinical decision-making during routine care and at highly sensitive times, such as the end of life, as well as the experiences when providing care in a variety of settings and patients, individually and within teams. Our findings highlight that simulation can be used for analysis of phenomena that are difficult for researchers to gain access to firsthand, and we discuss features for consideration when using simulation in qualitative health research.

Two's company, is three a crowd? Ethical cognition in decision making and the role of industry third parties in pediatric diabetes care.

Families of children with diabetes increasingly obtain health information from a variety of sources. Doctor-patient relationships have accordingly become more fluid and dynamic with input from other parties. These outside parties include representatives from the diabetes health care industry-industry third parties (ITPs). This review is an exploration of the ethical principles and cognitive processes involved when doctors and patients negotiate around health care practices and the role of ITPs in that dialogue. Ethical principles of conflicts of interest, beneficence (act in the best interests of the patient), non-maleficence (act so as to do no harm) and justice (act so as to allocate resources fairly or justly) are relevant considerations. Reflexive and analytic thinking and various cognitive biases also play a significant part in clinical decision making. A complex case example is analyzed to highlight a process of ethical cognition in decision making to ensure high-value care and optimal patient outcomes.