SETTING
Neonatal end-of-life decisions could be influenced by cultural and ethnic backgrounds. These practices have been well described in the West but have not been systematically studied in an Asian population.
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the…
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population…
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
OBJECTIVE:
To determine the causes and process of death in neonates in Canada.
DESIGN:
Prospective observational study.
SETTING:
Nineteen tertiary level neonatal units in Canada.
PARTICIPANTS:
942 neonatal deaths (215 full-term and 727…
Abstract
INTRODUCTION:
All-cause infant and childhood mortality has decreased in the UK over the last 30 years. Advances in paediatric critical care have increased survival in paediatric intensive care units (PICUs) but may have affected how and when…
Aims Neonatal death is not uncommon in tertiary neonatal intensive care. Though nurses are focussed on supporting parents through their loss, it is unclear how they are coping with this stress. We therefore aimed to explore the experiences of our…
Abstract
Prior to this study the children’s hospice had no evidence base to demonstrate parental satisfaction regarding the allocation of respite care for their child. The study explored the opinion of parents whose children received respite care at…
Abstract
Aim With continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in…
Abstract
Background Extensive changes to legislation in the last 15 years have led to a rapid expansion of the role of non-medical prescribers (NMPs). There appears to be a paucity of information evaluating the role that NMPs can play in paediatric…
Background Children and young people (CYP) with life-limiting (LLC) and life-threatening (LTC) conditions represent a growing and significant patient population. The effective delivery of integrated, holistic palliative healthcare for patients with…
Abstract
Aims To assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required.
Aim The use of Emergency care plans (ECPs) is recommended by ‘Together for Short Lives’, (TFSL) to prevent inappropriate escalation to futile interventions in children with incurable life-limiting conditions (LLC).
Objective To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0–25 years in Scotland with life-limiting conditions (LLCs).
Design National cohort of CYP with LLCs using linked routinely…
Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs.
Context This quality improvement project took place in a district general hospital paediatric department. The target population was all doctors in training, consultants, ward nurses and community nurses.
Background It is notoriously difficult to predict life expectancy for children with static neurological conditions (e.g. cerebral palsy). Identifying factors that make a child likely to be life limited and require an early palliative focus to their…
Paediatric palliative care is characterised by the holistic care provided to children living with life-limiting and life threatening conditions, ranging from providing symptom control to bereavement support. Due to the nature of the conditions many…
Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate…
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this…
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic…
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no…
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom…
Aim To determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance…
OBJECTIVE: To determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes. DESIGN: National cohort, data-linkage study. SETTING: PICUs in England. PATIENTS: Children…
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their…
Aims An audit of children and young person's advanced care plans (ACPs) in two district general hospitals (centres A and B) against NICE guidance [1]. Methods Centre A: consultants were emailed to identify the population with ACPs. Centre B: two…
Aims Children's hospices provide a range of services for children with life limiting (LLC) and life threatening conditions (LTC). Referral previously relied on obtaining supporting views from the child's paediatrician and there was often delay…
Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…
With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding). The conditions of children and young people who require…
Objective In English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is…
BACKGROUND: The number of children and young people (CYP) living with life-limiting and life-threatening conditions is rising. Paediatric palliative care is a relatively new aspect of healthcare, the delivery of which is variable, with a wide range…
OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous…
Like any new specialty, paediatric palliative medicine is facing challenges as it establishes itself. While many of the required core skills have their roots in adult palliative medicine, its practitioners come from a range of paediatric backgrounds…
OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to…
OBJECTIVE: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN: Systematic review. SETTING: Child and adult services and interface between healthcare providers. PATIENTS:…
AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of…
AIM To detail the everyday occurrence of pain in non-communicating children with cognitive impairment. METHODS Thirty four parents of cognitively impaired verbally non-communicating children completed pain diaries over a two week period. Each day,…
AIMS: To delineate common and variable features and outcome of children with congenital disorder of glycosylation type Ia (CDG-Ia) caused by the frequent R141H/F119L PMM2 genotype. METHODS: Clinical data on 25 patients (mean age 7.6 years, range…
AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…
