Adolescents with Rett syndrome at critical care pathway junctures: Examining clinicians' decision to initiate invasive long-term ventilation.

Background: The initiation of invasive long-term ventilation (I-LTV) for an adolescent with Rett Syndrome (RTT) involves many serious bioethical considerations. In moving towards a more inclusive model of patient participation, transparency surrounding the main influencing factors around this decision is important.

Objective: We aimed to identify the main drivers influencing a clinician's decision to support initiation of I-LTV for an adolescent with RTT.

The role of bioethics services in paediatric intensive care units: a qualitative descriptive study.

Background: There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care.

Methods: A qualitative descriptive design was used to describe clinician's perspectives on the functionality of clinical bioethics services for paediatric intensive care units.

The factorial survey as an approach to investigate clinical decision-making: examining influences on a clinician's decision to initiate life-sustaining clinical technology for a child with spinal muscular atrophy type 1.

Background: Spinal Muscular Atrophy (SMA) type 1 is a debilitating condition with a poor prognosis, though therapeutic advances are promising. Long-term ventilation is a common management strategy as respiratory function deteriorates. Without consensus on best practice respiratory management, the decision to initiate invasive LTV (I-LTV) for this group of young children involves many ethical considerations.

Technology solutionism in paediatric intensive care: clinicians' perspectives of bioethical considerations.

Background: The use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities.

Integrated care for children living with complex care needs: an evolutionary concept analysis.

Children with complex care needs (CCNs) are in need of improved access to healthcare services, communication, and support from healthcare professionals to ensure high-quality care is delivered to meet their needs. Integrated care is viewed as a key component of care delivery for children with CCNs, as it promotes the integration of healthcare systems to provide family and child-centred care across the entire health spectrum. There are many definitions and frameworks that support integrated care, but there is a lack of conceptual clarity around the term.

Development of a factorial survey for use in an international study examining clinicians' likelihood to support the decision to initiate invasive long-term ventilation for a child (the TechChild study).

Background: The decision to initiate invasive long-term ventilation for a child with complex medical needs can be extremely challenging. TechChild is a research programme that aims to explore the liminal space between initial consideration of such technology dependence and the final decision. This paper presents a best practice example of the development of a unique use of the factorial survey method to identify the main influencing factors in this critical juncture in a child's care.

The Meaning Given to Bioethics as a Source of Support by Physicians Who Care for Children Who Require Long-Term Ventilation.

The role and potential of bioethics input when a child requires the initiation of technology dependence to sustain life is relatively unknown. In particular, little is understood about the meaning physicians give to bioethics as a source of support during the care of children in pediatric intensive care who require long-term ventilation (LTV). We used a hermeneutic phenomenological approach to underpin the collection and analysis of data.

Comorbidities in older patients with myasthenia gravis - Comparison between early- and late-onset disease.

Background: Multimorbidity is an emerging challenge in older myasthenia gravis patients, which can have even greater impact on quality of life and outcome than symptoms of myasthenia.

Aims Of The Study: We aimed to investigate comorbidities in older population and compare early-onset (EOMG) and late-onset (LOMG) myasthenia patients.

Methods: We investigated clinical information of patients from Oxford Myasthenia Centre age 50 or older.

Triggers and Interventions of Patients Who Require Medical Emergency Team Reviews: A Cross-Sectional Analysis of Single Versus Multiple Reviews.

Background: Medical emergency teams constitute part of the escalation protocol of early warning systems in many hospitals. The literature indicates that medical emergency teams may reduce hospital mortality and cardiac arrest. A greater understanding of pathways of patients who experience multiple medical emergency team reviews will inform clinical decision-making.

Initiating technology dependence to sustain a child's life: a systematic review of reasons.

Background: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions.

Parents and health professionals' experiences and perceptions of blended feeding in tube-fed children: a qualitative systematic review protocol.

Objective: The objective of this review is to identify and synthesize the best available evidence on parents' and health professionals' experiences and perceptions of blended feeding in tube-fed children in order to promote effective decision-making on its use.

Introduction: Blended feeding is not a new concept, despite the fact that commercial formulas have displaced its use in recent years. As feeding is viewed as an intimate experience between a parent and child, the choice of individualized blended feeds is something to be considered; however, professionals find there is a lack of evidence and discussion to support the use of blended feeding in practice.

A systematic concept analysis of 'technology dependent': challenging the terminology.

There are an increasing number of children who are dependent on medical technology to sustain their lives. Although significant research on this issue is taking place, the terminology used is variable and the concept of technology dependence is ill-defined. A systematic concept analysis was conducted examining the attributes, antecedents, and consequences of the concept of technology dependent, as portrayed in the literature.

Patients' experiences of living with multiple myeloma.

Background: Multiple myeloma is a B-cell haematological malignancy characterised by uncontrolled plasma cell proliferation. Patients with the disease often undergo periods of remission followed by multiple relapses. Understanding patients' experience of living with this chronic condition is key to providing effective patient-centred care.

Disclosure strategies in adults with epilepsy when telling, "I have epilepsy": The How2tell study.

Objective: To generate evidence-based knowledge about the strategies that adult people with epilepsy (PWEs) use in the process of telling others about their epilepsy.

Methods: In-depth, one-to-one interviews explored PWEs' first-hand experiences of self-disclosure (or not), and grounded theory methods of inductive-deductive analysis were used to identify strategies used in disclosing. Interviews were audio-recorded, transcribed, coded, and independently recoded by two researchers using a coding framework specifically developed in this study.

Experiences and perceptions of emergency department nurses regarding people who present with mental health issues: a systematic review protocol.

Objective: The objective of this review is to identify, appraise and synthesize available evidence related to the experiences and perceptions of emergency department (ED) nurses regarding people with any mental health issue who present at the ED.

Introduction: The ED is often the first point of contact for patients with a mental health issue, due to a shortage of available mental health services. Nursing staff in the ED are involved in key clinical decision making and hands-on care for these patients, despite a lack of mental health specialist training.

The introduction of the Early Warning Score in the Emergency Department: A retrospective cohort study.

Background: The combined use of the Manchester Triage System (MTS) with the Early Warning Score (EWS) may be useful in ensuring both appropriate prioritisation and continued monitoring in the Emergency Department (ED) leading to early intervention for deteriorating patients thus improving patient outcomes especially in overcrowded EDs.

Purpose: Determine the effect of the EWS and MTS on accuracy of the MTS and ED waiting times.

Methods: A retrospective cohort chart review of all adult patients who presented to the ED in one large hospital in Ireland (n = 10,048) at three time points between 1st September 2015-30th September 2016; 3 months prior to EWS introduction, implementation month and 9 months post-implementation.

Thymus imaging in myasthenia gravis: The relevance in clinical practice.

Introduction: The ability to distinguish between normal thymus, thymic hyperplasia, and thymoma should aid clinical management and decision making in patients with myasthenia gravis (MG). We sought to determine the accuracy of routine imaging in predicting thymic pathology.

Methods: We retrospectively analyzed records of patients with MG from the Oxford Myasthenia Centre registry who had undergone thymectomy.

Barriers to effective, safe communication and workflow between nurses and non-consultant hospital doctors during out-of-hours.

Objective: This study aimed to evaluate the nature and type of communication and workflow arrangements between nurses and doctors out-of-hours (OOH). Effective communication and workflow arrangements between nurses and doctors are essential to minimize risk in hospital settings, particularly in the out-of-hour's period. Timely patient flow is a priority for all healthcare organizations and the quality of communication and workflow arrangements influences patient safety.

Discharge of Non-Acute Coronary Syndrome Chest Pain Patients From Emergency Care to an Advanced Nurse Practitioner-Led Chest Pain Clinic: A Cross-Sectional Study of Referral Source and Final Diagnosis.

Background: Chest pain is a common presentation to emergency departments (EDs). Pathways for patients with non-acute coronary syndrome (ACS) chest pain are not optimal. An advanced cardiology nurse-led chest pain service was commenced to address this.

The relationship between body mass index and health-related quality of life in urban disadvantaged children.

Introduction: The study's aim was to establish, for children living in urban disadvantage, the nature and extent of the relationship between body mass index (BMI) and health-related quality of life (HRQoL), including the role of individual and family factors in influencing this relationship.

Methods: Within the context of a longitudinal design, 255 children aged 7-12 years (50 % male) self-reported their HRQoL (Kidscreen-27) and had their height and weight measured at year one and two. One parent/guardian for each child was also assessed at year one with the OSLO Social Support Scale and Hospital Anxiety and Depression Scale.

Baseline results of the first healthy schools evaluation among a community of young, Irish, urban disadvantaged children and a comparison of outcomes with international norms.

Background: In 2008, the Irish Government initiated a pilot Healthy Schools Programme based on the World Health Organization Health Promoting Schools Model among children attending schools officially designated as urban and disadvantaged. We present here the first results on physical and emotional health and the relationship between childhood depression and demographic and socioeconomic factors.

Methods: The Healthy Schools Programme evaluation was a 3-year longitudinal outcome study among urban disadvantaged children aged 4 to 12 years.

Measuring and modelling body mass index among a cohort of urban children living with disadvantage.

Aim: To report on baseline outcomes of body mass index, eating habits and physical activity of a cohort of urban disadvantaged children from a longitudinal evaluation of a school based, health promoting initiative.

Background: The healthy schools programme was developed for implementation in schools located in disadvantaged areas of Dublin, Ireland.

Design: A prospective, cohort study design was implemented.