Children's and Parents' Consent to Heart Surgery: End of project report to the British Heart Foundation

This social science project is seeking to advance the debate on informed consent. The prospect of having any kind of medical procedure can be stressful and worrying, but often if we find out more about it and know what to expect, some of those worries can be eased. But knowing at what stage and how to inform and involve children in decisions about their planned heart surgery is tricky. When are they old enough to give consent, and when should it be left to their parents? Dr Sutcliffe and colleagues will address these questions by interviewing 40 patients aged 6-15 before and after heart surgery, their parents and 20 doctors and nurses. Through these interviews they will collect views on the best ways to inform, respect, support and involve young patients and their parents before surgery. The current practices around informed consent will also be observed in two hospitals and the related legal, medical and ethical debates will be reviewed. This project aims to inform policy on the issue of informed consent for children. The findings will help healthcare professionals and parents understand when and how best to seek children’s views about their own heart surgery, to minimise their stress, fear and misunderstanding

Problemas de aplicabilidad jurisprudencial del delito de depredación de bosques, cometido por entidades empresariales en El Salvador

Este trabajo de investigación, que se presenta con la finalidad de obtener el grado académico de maestra en Derecho Penal Económico, denominado “Problemas de aplicabilidad jurisprudencial del delito de Depredación de los Bosques, cometido por entidades empresariales en El Salvador”, aborda los problemas de interpretación y aplicabilidad jurisprudencial del tipo penal previsto en el Art. 258 CPn., cuando es realizado por entidades empresariales, mismo que se desarrolla por considerar de vital importancia la protección del recurso renovable bosque en nuestro país. Además, tiene trascendencia por el tipo de criminalidad que ejecuta los delitos en contra del medio ambiente, en los que se ven involucrados los delincuentes de cuello blanco, que manejan estructuras complejas, y la empresa es utilizada como medio para cometer los delitos que, por lo general, se ejecutan porque tienen relación con la actividad de producción que realizan. Derivado de lo anterior, se ve la necesidad de aplicar el derecho penal económico que tiene por finalidad sancionar los delitos que se realizan en contra del orden socioeconómico, el que en nuestro país se regula en el artículo 101 de la Constitución de la República, el cual se entiende como el conjunto de las estructuras (factores, instituciones y normas) que se encuentran organizados, para satisfacer necesidades de los hombres a través de la utilidad de los medios y de los recursos disponibles, dentro de esos recursos se encuentran los que aporta la naturaleza como los bosques, que se convierten en materia prima para la industria

Infant and family centred developmental care in neonatal intensive care units during the COVID-19 pandemic: interactive gap map of global evidence

Objectives: We explore how infant and family centred developmental care (IFCDC) practices were adapted or affected in neonatal intensive care units (NICU) during the COVID-19 pandemic in hospitals around the world, and whether new approaches to communicate/engage with families developed as a result. / Materials and methods: We conducted a systematic review of primary empirical studies sourced from a Living Map of COVID-19 maintained by the UCL EPPI Centre. A supplement search was conducted on three medical databases CINAHL, PubMed and EMBASE. Key IFCDC search terms were developed alongside a steering group of stakeholders, which was established to ensure that the methods were fit-for-purpose, and the findings are relevant. Studies were included if they reported IFCDC outcomes of sick or preterm infants in NICUs and if data collection took place during the Covid-19 pandemic. / Results: We present an evidence gap map of 36 studies exploring NICU practices related to: family support, family access to baby, support for bonding with parents and siblings, supportive sensory environment, skin-to-skin contact, breastfeeding and breastmilk feeding, support for transition from hospital to home and follow up care in the community, institutional guidelines for small and sick newborn care, use of digital devices to support IFCDC. / Conclusions: Evidence on COVID-adaptive IFCDC practices exists for the Global North, showcasing different levels of support for infants and families and describing how existing digital technology was used to enhance communication between parents and medical professionals. Less is known about what IFCDC practices existed, and how these were affected, in the Global South during the COVID-19 pandemic. Existing evidence needs to be assessed and made widely available to support IFCDC practices now and in future crises

Family centred neonatal palliative care in children's hospices : a qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies

How do you develop a career at the policy-research interface?

Context: Careers at the policy-research interface may be ill-defined and require reframing of identity, depending on context and purpose. We wanted to explore this further as part of our involvement with the Partnership for Evidence and Equity in Responsive Social Systems (PEERSS) - a global partnership working to advance the use of evidence for progress in social systems. / Aim: To share and prompt thinking about the skills, opportunities and barriers of such careers. / Method: We iteratively develop themes informed by ecological theoretical frameworks, literature on policy-research interface, group discussion, and autoethnographies of people at a range of career stages and backgrounds. We invite participants to contribute their own views via a Padlet platform. / Results and discussion: We highlight some of the individual attitudes and behaviours, socio-demographic factors, immediate environment, and wider context shaping early career development. / Conclusions: While it may be challenging to distinguish specific themes from influences that may apply to other career trajectories, the emerging narrative generated provide useful and important insights for those wanting to develop roles in this area

The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study

BACKGROUND: Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these with research findings on how health professionals counsel young children before elective heart surgery, respect their consent or refusal, and maintain patient-centred care. METHODS: This qualitative research involved: literature reviews about children’s consent to surgery and major interventions; observations of wards, clinics and medical meetings in two paediatric cardiology departments, October 2019 to February 2020; audio-recorded semi-structured interviews with 45 hospital staff, including 5 anaesthetists, and related experts, November 2019 to April 2021; interviews with 16 families, with children aged 6- to 15-years and their parents shortly after elective heart surgery, and some months later (reported in other papers); thematic data analysis; and research reports on how different professions contribute to children’s informed decisions for heart surgery. RESULTS: The medical, ethics and English legal literature tend to assume legal minors cannot refuse major recommended treatment, and cannot consent until they are 12 years or older. Little is said about informing pre-competent children. If children resist, some anaesthetists rely on sedation and distraction, and avoid much informed discussion, aiming to reduce peri-operative anxiety. However, interviewees reported informing young children, and respecting their consent or refusal before elective surgery. They may delay elective surgery and provide further information and support, aiming to reduce fear and promote trust. Six years of age was commonly cited as the threshold for respecting consent to heart transplantation. COCNLUSION: Differing views about younger children’s competence, anxiety and best interests support different reactions to children’s consent and refusal before elective heart surgery. This paper reports the zero-restraint policy followed for over a decade in at least one leading surgery centre. The related law and literature need to be updated, to take more account of evidence of actual practice

Children’s understanding and consent to heart surgery: Multidisciplinary teamwork and moral experiences

Mainstream law and ethics literature on consent to children’s surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies. Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion. Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children’s reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children’s consent or refusal before non-urgent surgery as a shared personal moral experience within the child’s life course, beyond mere legal compliance. Adults help children to understand and ‘want’ the surgery that offers things they value: better health or to ‘be more like their friends’. If children are not convinced, sometimes surgery is postponed or occasionally cancelled.</br

Perinatal/neonatal palliative care : effecting improved knowledge and multi-professional practice of midwifery and children's nursing students through an inter-professional education initiative

This paper presents a study that examines the potential value of a new and innovative inter-professional education (IPE) experience for final year midwifery and children's nursing students focused on improving awareness of end-of-life care for infants in conjunction with the support of their families. The study uses an action research approach to examine midwifery and children's nursing student experiences of an IPE initiative in developing knowledge regarding perinatal/neonatal palliative care. // The setting is a Higher Education Institute in the South of England that included final year midwifery students (n = 39) and children's nursing students (n = 34) taking part in the study. Qualitative and quantitative data indicated that the IPE intervention had proven worth in developing knowledge and confidence in the students as both student groupings felt they lacked knowledge and confidence about perinatal/neonatal palliative care before attending the study day. // Students felt that learning with, from and about the other profession represented was important in generating their knowledge. Educators should explore innovative ways to enable the further development of the fledgling speciality of perinatal/neonatal palliative care through education on an interprofessional platform

Infants prenatally exposed to SARS-CoV-2 show the absence of fidgety movements and are at higher risk for neurological disorders: A comparative study

Congenital viral infections are believed to damage the developing neonatal brain. However, whether neonates exposed to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) show manifestations of such damage remains unclear. For neurodevelopment evaluation, general movement assessments have been shown to be effective in identifying early indicators of neurological dysfunction, including the absence of fidgety movements. This study compared the early motor repertoire by general movement assessment at three to five months of age in neonates who were or were not prenatally exposed to SARS-CoV-2 to determine whether infants prenatally exposed to SARS-CoV-2 are at risk of developing neurological disorders. Fifty-six infants, including 28 in the exposed group of mothers without vaccination who had no need for intensive care and likely had SARS-CoV-2 infection close to the time of pregnancy resolution and 28 infants in the nonexposed group, were videotaped to compare their detailed early motor repertoires, in which a motor optimality score-revised (MOS-R) was calculated using Prechtl’s method by using the chi-square or Mann–Whitney U tests. In the exposed group, 3 (11%) infants showed the absence of fidgety movements with a total MOS-R&lt;14 points, and 3 (11%) other infants showed abnormal fidgety movements. Between groups, atypical body symmetry (p = 0.009) and MOS-R values were significantly lower (Z = -3.08, p = 0.002), with a large size effect (Cohen’s d = 0.97). The consequences of this new virus go beyond the health of the pregnant mother, and these consequences in some of the infants in the exposed group are likely not transitory because of the absence of fidgety movements between 3–5 months; thus, these babies are at increased risk of developing a serious neurological disorder