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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).

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.

INTRODUCTION: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve greater psychological fidelity. For simulated encounters related to a child's end-of-life, involvement of bereaved parents would make sense. However, this is challenging because there is limited research to guide their inclusion and significant responsibility for any approach to be thoughtful and psychologically safe for participating parents. This study explores the impact and experiences of bereaved parents and actors who participated in simulation design. METHODS: This qualitative phenomenological study involved five bereaved parents and two actors who participated in a full-day workshop to design and develop characters for use in a simulation. Individual semistructured interviews were conducted up to four weeks after the workshop. Data collected from these telephone interviews were analyzed using inductive content analysis. RESULTS: Bereaved parents found the workshop emotionally challenging but positive, worthwhile, and beneficial. Similarly, actors found the workshop helpful in character development and, although it was an intense experience for them, it validated the importance of their work. Key elements of our research findings could inform future such activities. CONCLUSIONS: Involving bereaved parents in simulation design can be psychologically safe and beneficial for both parents and actors. Ongoing involvement of bereaved parents may lead to higher-quality simulated experiences, allowing clinicians to practice skills to enhance care provided at a child's end-of-life.

OBJECTIVES: Policy makers in developed countries have long considered the education system an avenue for supporting mental health care for children. Whilst educators have identified many challenges to providing this support (e.g. non-core role, stigma, overcrowded curriculum), understanding clinicians' views on the role of educators and schools and how clinicians and schools could work together to achieve good mental health outcomes are important questions. However, clinician voices in how schools and health should work together for children's mental health care are frequently missing from the debate. We aimed to report clinicians' views about how the education system could support student's mental health and improve access to mental health care for children and adolescents. METHODS: 143 clinicians (approximately 35 each of child and adolescent psychiatrists, pediatricians, child psychologists and general practitioners (GPs)) from the states of 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: Key themes emerged: (1) The role of schools in supporting individual children; (2) School based programs to support children and families; and (3) Challenges of implementing these suggestions. Clinicians across all professional groups suggested the education system could play an important role in improving access to mental health services through harnessing existing staff or co-locating mental health clinicians. They also suggested schools could identify at risk children and implement coping and social skills programs. CONCLUSIONS: Schools and educators could play a key role in prevention and early intervention of children's mental health problems. However, before recommending exactly how to do this, key evidence gaps need to be addressed.

OBJECTIVES: Global, COVID-driven restrictions around face-to-face interviews for healthcare student selection have forced admission staff to rapidly adopt adapted online systems before supporting evidence is available. We have developed, what we believe is, the first automated interview grounded in multiple mini-interview (MMI) methodology. This study aimed to explore test-retest reliability, acceptability and usability of the system. DESIGN, SETTING AND PARTICIPANTS: Multimethod feasibility study in Physician Associate programmes from two UK and one US university during 2019-2020. PRIMARY, SECONDARY OUTCOMES: Feasibility measures (test-retest reliability, acceptability and usability) were assessed using intraclass correlation (ICC), descriptive statistics, thematic and content analysis. METHODS: Volunteers took (T1), then repeated (T2), the automated MMI, with a 7-day interval (±2) then completed an evaluation questionnaire. Admission staff participated in focus group discussions. RESULTS: Sixty-two students and seven admission staff participated; 34 students and 4 staff from UK and 28 students and 3 staff from US universities. Good-excellent test-retest reliability was observed at two sites (US and UK2) with T1 and T2 ICC between 0.65 and 0.81 (p<0.001) when assessed by individual total scores (range 80.6-119), station total scores 0.6-0.91, p<0.005 and individual site (≥0.79 p<0.001). Mean test re-test ICC across all three sites was 0.82 p<0.001 (95% CI 0.7 to 0.9). Admission staff reported potential to reduce resource costs and bias through a more objective screening tool for preselection or to replace some MMI stations in a 'hybrid model'. Maintaining human interaction through 'touch points' was considered essential. Users positively evaluated the system, stating it was intuitive with an accessible interface. Concepts chosen for dynamic probing needed to be appropriately tailored. CONCLUSION: These preliminary findings suggest that the system is reliable, gener

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 thi

OBJECTIVES: Advance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself. DESIGN: Individual, semistructured, vignette-based qualitative interviews. SETTING: Acute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia. PARTICIPANTS: 25 purposively sampled paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study's design. RESULTS: Four key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child's risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance. CONCLUSION: There is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the

BACKGROUND: Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate its harmful effects. However, the effects of participating in moral distress studies have not been evaluated. OBJECTIVE: To evaluate the impact of participation in a longitudinal, non-intervention research project on moral distress in the NICU. DESIGN: Clinicians who previously participated in an 18-month longitudinal research study on moral distress at two NICUs were invited to complete a questionnaire on the impact of participation. The original study required regular completion of surveys that sought predictions of death, disability and the intensity/nature of moral distress experienced by clinicians caring for extremely preterm babies. Individual and unit-wide effects were explored. Free-text responses to open-ended questions were analyzed using inductive content analysis. RESULTS: A total of 249/463 (53%) eligible clinicians participated. Participation in the original 18-month study was perceived as having a positive impact by 58% of respondents. Clinicians found articulating their views therapeutic (76%) and useful in clarifying personal opinions about the babies (85%). Free-text responses revealed the research stimulated increased reflection, validated feelings and increased dialogue amongst clinicians. Respondents generally did not find participation distressing (70%). However, a small number of physicians felt the focus of discussion shifted from the baby to the clinicians. Intensity and prevalence of moral distress did not significantly change over the 18-month period. CONCLUSIONS: Participating in moral distress research prompted regular reflection regarding attitudes toward fragile patients, improving ethical awareness. This is useful in clarifying personal views that may influence patient care. Participation also enhanced communication around difficu

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.

International guidelines recommend discussion and provision of written information about the impact of cancer treatment on fertility with all cancer treatments. In addition, FP options (freezing sperm, eggs or reproductive tissue) should be offered where appropriate prior to cancer treatment. Fertility discussions with paediatric and adolescent oncology patients can be difficult. Complex clinical, logistical and ethical issues present barriers to care. In 2013 a structured fertility program was implemented at The Royal Children's Hospital. We report on the implementation and impact of the structured fertility program, including adherence to key performance indicators and the benefits of coordinated care. Method(s): Periodic clinical and institutional needs assessments were undertaken according to the Knowledge-to-Action implementation framework. A bi-directional, pre- and post-implementation study was undertaken between 2013 and 2019. All patients and familieswho had a fertility discussion between 1987 and 2019 were recruited. Result(s): A formalised fertility program and audit was implemented in 2013. In 2018 a fertility nurse coordinator was introduced to the program. 500 participants (pre- and post-program) were recruited. Documented discussion rates increased from 6% (pre-program) to 38% in 2018, and 100% with the introduction of the oncofertility coordinator. The proportion of newly diagnosed patients who received written information reached 100% in 2018. Post-implementation fertility discussions occurred more commonly prior to treatment (p = .02), and with younger patients (median age 14.5 pre-program, 8.4yrs postprogram). A total of 447 FP interventions had been undertaken with a median age of 8 years (range 0.1-18 years). The overwhelming majority of patients experienced no delay to cancer treatment (94.9%, n = 203/214), and had no intra- or post-operative complications (94.4%, n = 202/214). Conclusion(s): Fertility programs in paediatric settings can be saf

Introduction and aim: Reproductive technologies are rapidly evolving and the presence of fertility preservation programs are now a benchmark criterion for centres of excellence at US paediatric centres. However, oncofertility practice is complex in the young, posing significant ethical and logistical concerns. Therefore, disparities in care are common. In December 2019 a meeting of oncofertility champions from all Australian states and NZ nominated by the Australian and New Zealand Children Haematology and Oncology Group (ANZCHOG), leading reproductive scientists and ethicists was convened at The Royal Children's Hospital, Melbourne. The meeting provided a forum to discuss the current state of fertility care across all 13 ANZCHOG centres, identify gaps in services and barriers to care, andmake recommendations to guide national priorities. We report on findings from the meeting including service needs and barriers to care. Method(s): A representative from each of the 13 ANZCHOG centres presented their responses to a semi-structured survey about current service provision and barriers to care. Thematic qualitative analysis was undertaken and recommendations for future directions in fertility care were formulated. Results/conclusions:Most ANZCHOG centres offered fertility discussion to patients but only three of 13 had formalised governance.Acommon thread in the dialog of attendees was a desire to provide the highest quality safe oncofertility care accessible to all families regardless of their geographical location or sociodemographic status. National priorities included paediatric specific oncofertility guidelines and standard operating protocols, implementation of oncofertility coordinators, clinician training, national data collection and benchmarks of care, Medicare funding, laboratory accreditation and surgical credentialing. Through binational governance, and translation of research into clinical practice, the coalition aims towork collaboratively towards develop

BACKGROUND: Significant challenges persist in treating children with rare, relapsed, or refractory malignancies. Novel molecularly targeted drugs promise improved outcomes for these children with reduced toxicity. However, there is often limited evidence to substantiate their clinical efficacy and guide their use. This raises issues for clinical decision-making, ethical concerns surrounding equity of access to these often-expensive agents, and the management of families' expectations for cure. This audit evaluated the off-label use of novel drugs and associated clinical outcomes in order to guide the development of future clinical and ethical guidelines. AIM: To evaluate the patterns in the off-label use of novel drugs for treating childhood cancer and the associated clinical outcomes to guide prospective studies and inform ethical and clinical governance protocols for the use of these agents. METHODS: A retrospective audit was performed for all patients who received novel drugs off-label as treatment for their malignancy at an Australian pediatric oncology center between 2010 and 2019. RESULTS: One hundred patients with 32 unique diagnoses received 133 novel drugs across 124 regimens. Eighty-four patients received these drugs at the second line of treatment or greater. Novel drug median cost was $15 521 AUD (Range: $6.53 AUD to $258 339 AUD) and was primarily funded by the hospital (N = 60/133, 45.1%) or compassionate access from pharmaceutical companies (N = 52/133, 39.1%). Decision-making related to novel drugs was inconsistently documented. Ninety-one of 124 treatment regimens commenced between 2010 and 2019 resulted in objective responses (73.4%), but only 35 were still ongoing upon review in June 2020 (38.5%). Median response duration was 12.6 months (Range: 0-93.2 months). CONCLUSIONS: While novel drugs were largely unable to definitively cure patients, most achieved objective responses. Prospective trials and more rigorous documentation are needed to fully i

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.

BACKGROUND: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. METHODS: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP). RESULTS: One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival. CONCLUSION: Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

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.

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. Method(s): 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(s): 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.Copyright © 2020, Commonwealth of Australia. Journal of Paediatrics and Child Health © 2020 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).

Children have not been severely affected by SARS-CoV-2-related illness but are vulnerable to the economic and social deprivation arising from the pandemic. This document describes unique risks and burdens for children and their care givers during the COVID-19 pandemic.

Internet of Things (IoT) is producing an extraordinary volume of data daily, and it is possible that the data may become useless while on its way to the cloud, due to long distances. Fog/edge computing is a new model for analysing and acting on time-sensitive data, adjacent to where it is produced. Further, cloud services provided by large companies such as Google, can also be localised to improve response time and service agility. This is accomplished through deploying small-scale datacentres in various locations, where needed in proximity of users; and connected to a centralised cloud that establish a multi-access edge computing (MEC). The MEC setup involves three parties, i.e. service-providers (IaaS), application-providers (SaaS), network-providers (NaaS); which might have different goals, therefore, making resource management difficult. Unlike existing literature, we consider resource management with-respect-to all parties; and suggest game-theoretic resource management techniques to minimise infrastructure energy consumption and costs while ensuring applications' performance. Our empirical evaluation, using Google's workload traces, suggests that our approach could reduce up to 11.95% energy consumption, and ~17.86% user costs with negligible loss in performance. Moreover, IaaS can reduce up-to 20.27% energy bills and NaaS can increase their costs-savings up-to 18.52% as compared to other methods.

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significant and potentially sustained effects of COVID-19 on the physical, psychological, and emotional health and well-being of children. Focusing on the context of children's cancer care, and specifically bone marrow transplant (BMT), we describe some of these effects and then address one specific ethical challenge that arises. That is the question of what and how much to tell children whose cancer treatment has been changed because of COVID-19. Drawing on our previous work on the ethical reasons for telling the truth to younger children (aged 5-12) we link different ethical reasons to the different types of information that could be given to children in this context. We argue that children should be given an explanation of the changes that they will directly experience, including some changes to the process of their actual medical treatment; but not about increased risk associated with these changes, unless they specifically ask for this information.

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.

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.

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.

PURPOSE: With over 80% of paediatric and adolescent cancer patients surviving into adulthood, quality-of-life issues such as future fertility are increasingly important. However, little is known about regret around decisions to pursue or forgo fertility preservation (FP). We investigated the risk of decision regret in families involved in making a FP decision and explored contributive factors. METHODS: Parents and patients ≥ 15 years were invited to participate. Participants completed a 10-item survey, including a validated Decision Regret Scale. Scores ≥ 30 indicated high regret. Free-text response items allowed participants to provide reasons for satisfaction or regret. RESULTS: A total of 108 parents and 30 patients participated. Most (81.4%) reported low regret (mean score 13.7). On multivariate analysis, predictors of low regret included having a FP procedure and a fertility discussion pre-treatment. Most participants believed that FP offers hope for future fertility. Some reported dissatisfaction with the process of decision-making. CONCLUSION: Overall levels of regret in the study population were low, with factors associated with quality, timely discussion and belief in the success of FP technology being predictors of low regret. However, dissatisfaction with the decision-making process itself revealed that refinements to the programme are required to meet families' needs.

Purpose: With over 80% of paediatric and adolescent cancer patients surviving into adulthood, quality-of-life issues such as future fertility are increasingly important. However, little is known about regret around decisions to pursue or forgo fertility preservation (FP). We investigated the risk of decision regret in families involved in making a FP decision and explored contributive factors. Method(s): Parents and patients >= 15 years were invited to participate. Participants completed a 10-item survey, including a validated Decision Regret Scale. Scores >= 30 indicated high regret. Free-text response items allowed participants to provide reasons for satisfaction or regret. Result(s): A total of 108 parents and 30 patients participated. Most (81.4%) reported low regret (mean score 13.7). On multivariate analysis, predictors of low regret included having a FP procedure and a fertility discussion pre-treatment. Most participants believed that FP offers hope for future fertility. Some reported dissatisfaction with the process of decision-making. Conclusion(s): Overall levels of regret in the study population were low, with factors associated with quality, timely discussion and belief in the success of FP technology being predictors of low regret. However, dissatisfaction with the decision-making process itself revealed that refinements to the programme are required to meet families' needs.Copyright © 2019, Springer Science+Business Media, LLC, part of Springer Nature.

AIM: To develop a Neonatal Intervention Score (NIS) to describe the clinical trajectory of a neonate throughout their neonatal intensive care unit (NICU) admission. METHODS: The NIS was developed by modifying the Neonatal Therapeutic Intervention Scoring System (NTISS) to reflect illness severity, dependency on life-sustaining interventions and overall life trajectory on a longitudinal basis, rather than illness burden. Validity for longitudinal use within the NICU was tested by calculating the score for 99 preterm babies born less than 28 weeks at predetermined time points throughout their admission to tertiary level care at two institutions. RESULTS: A total of 1333 NISs were analysed, ranging from 0 to 32.5 (mean 9.77, SD 5.4). Internal consistency (Cronbach alpha) reached 0.8. NIS moderately correlated to both SNAPPE-II and SNAP-II (Spearman's rho = 0.47, p =< 0.001) within the first 24 hours. CONCLUSION: The NIS is a useful and reliable descriptive tool of relative illness severity and degree of medical interventions throughout a baby's admission. Integrating a longitudinal description of medical dependency of a patient may assist both clinical and ethical decision-making and empirical research by providing an objective account of a baby's clinical trajectory. Establishment of validity within individual institutions is required.

BACKGROUND: In Victoria, Australia, the law regulating abortion was reformed in 2008, and a clause ('Section 8') was introduced requiring doctors with a conscientious objection to abortion to refer women to another provider. This study reports the views of abortion experts on the operation of Section 8 of the Abortion Law Reform Act in Victoria. METHODS: Nineteen semi-structured qualitative interviews were conducted with purposively selected Victorian abortion experts in 2015. Interviews explored the impact of abortion law reform on service provision, including the understanding and implementation of Section 8. Interviews were transcribed verbatim and analysed thematically. RESULTS: The majority of participants described Section 8 as a mechanism to protect women's right to abortion, rather than a mechanism to protect doctors' rights. All agreed that most doctors would not let moral or religious beliefs impact on their patients, and yet all could detail negative experiences related to Section 8. The negative experiences arose because doctors had: directly contravened the law by not referring; attempted to make women feel guilty; attempted to delay women's access; or claimed an objection for reasons other than conscience. Use or misuse of conscientious objection by Government telephone staff, pharmacists, institutions, and political groups was also reported. CONCLUSION: Some doctors are not complying with Section 8, with adverse effects on access to care for some women. Further research is needed to inform strategies for improving compliance with the law in order to facilitate timely access to abortion services.

When parents ask doctors not to disclose certain information to a child, doctors are challenged to articulate ethical reasons for giving information to children. This paper maps out the professional and legal landscape in which information-giving to children is taking place and identifies the key ethical arguments that have been made for disclosure of information to the child patient. We focus on pre-adolescent children, who have not reached a developmental stage that would see them regarded as 'mature minors'. While doctors can be relatively certain that professional and legal requirements will endorse their disclosure of information to the 'mature minor', guidelines are not clear on information-giving to pre-adolescents (immature minors). We identify six ethical reasons for telling the truth to younger children. It is noteworthy that there are good reasons to tell the truth to children, which are independent of any question of the child's capacity to be involved in decision-making.

STUDY QUESTION: Does an informed group of citizens endorse the clinical use of mitochondrial donation in a country where this is not currently permitted? SUMMARY ANSWER: After hearing balanced expert evidence and having opportunity for deliberation, a majority (11/14) of participants in a citizens' jury believed that children should be able to be born using mitochondrial donation. WHAT IS KNOWN ALREADY: Research suggests that patients, oocyte donors and health professionals support mitochondrial donation to prevent transmission of mitochondrial disease. Less is known about public acceptability of this novel reproductive technology, especially from evidence using deliberative methods. STUDY DESIGN, SIZE, DURATION: This study comprised a citizens' jury, an established method for determining the views of a well-informed group of community members. The jury had 14 participants, and ran over one and a half days in 2017. PARTICIPANTS/MATERIALS, SETTING, METHODS: Jurors were members of the public with no experience of mitochondrial disease. They heard and engaged with relevant evidence and were asked to answer the question: 'Should Australia allow children to be born following mitochondrial donation?' MAIN RESULTS AND THE ROLE OF CHANCE: Eleven jurors decided that Australia should allow children to be born following mitochondrial donation; 7 of whom added conditions such as the need to limit who can access the intervention. Three jurors decided that children should not (or not yet) be born using this intervention. All jurors were particularly interested in the reliability of evidence, licensing/regulatory mechanisms and the rights of children to access information about their oocyte donors. LIMITATIONS, REASONS FOR CAUTION: Jurors' views were well informed and reflected critical deliberation and discussion, but are not intended to be representative of the whole population. WIDER IMPLICATIONS OF THE FINDINGS: When presented with high quality evidence, combined with opportun

Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this paper, we discuss ethical complexities of involving children as co-researchers beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-researchers. We conclude by providing a list of questions for reflexive researchers to ask of themselves when they use child co-research methodology. We also provide important questions for Human Research Ethics Committees to ask when they review projects using child co-research.

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.

STUDY QUESTION Does an informed group of citizens endorse the clinical use of mitochondrial donation in a country where this is not currently permitted? SUMMARY ANSWER After hearing balanced expert evidence and having opportunity for deliberation, a majority (11/14) of participants in a citizens' jury believed that children should be able to be born using mitochondrial donation. WHAT IS KNOWN ALREADY Research suggests that patients, oocyte donors and health professionals support mitochondrial donation to prevent transmission of mitochondrial disease. Less is known about public acceptability of this novel reproductive technology, especially from evidence using deliberative methods. STUDY DESIGN, SIZE, DURATION This study comprised a citizens' jury, an established method for determining the views of a well-informed group of community members. The jury had 14 participants, and ran over one and a half days in 2017. PARTICIPANTS/MATERIALS, SETTING, METHODS Jurors were members of the public with no experience of mitochondrial disease. They heard and engaged with relevant evidence and were asked to answer the question: Should Australia allow children to be born following mitochondrial donation?' MAIN RESULTS AND THE ROLE OF CHANCE Eleven jurors decided that Australia should allow children to be born following mitochondrial donation; 7 of whom added conditions such as the need to limit who can access the intervention. Three jurors decided that children should not (or not yet) be born using this intervention. All jurors were particularly interested in the reliability of evidence, licensing/regulatory mechanisms and the rights of children to access information about their oocyte donors. LIMITATIONS, REASONS FOR CAUTION Jurors' views were well informed and reflected critical deliberation and discussion, but are not intended to be representative of the whole population. WIDER IMPLICATIONS OF THE FINDINGS When presented with high quality evidence, combined with opportunities to

Purpose: Fertility preservation (FP) discussions in children with cancer presents unique challenges due to ethical considerations, lack of models-of-care, and the triadic nature of discussions. This study evaluated a fertility toolkit for clinicians involved in FP discussions with pediatric, adolescent, and young adult patients and parents. Material(s) and Method(s): A survey-based, longitudinal study of clinicians at The Royal Children's Hospital Melbourne involved in FP discussions undertaken at 3 time-points: 2014, alongside an education session for baseline assessment of oncofertility practices (survey 1); after each toolkit use to evaluate case-specific implementation (survey 2); 2016, to evaluate impact on clinical practice (survey 3). Result(s): Fifty-nine clinicians completed survey 1. Over 66% reported baseline dissatisfaction with the existing FP system; 56.7% were not confident in providing up-to-date information. Only 34.5% "often" or "always" provided verbal information; 14.0% "often" or "always" provided written information. Survey 2 was completed after 11 consultations. All clinicians were satisfied with the discussions and outcomes using the toolkit. Thirty-nine clinicians completed survey 3. Over 70% felt confident providing up-to-date FP knowledge, 67.7% "often" or "always" provided verbal information, and 35.4% "often" or "always" provided written information. Conclusion(s): Clinicians desire improvement in FP practice. The toolkit provided significant perceived and actual benefits.Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.