Browse Items (134 total)

OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS:…

Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning.…

Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…

OBJECTIVE: End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This…

Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of…

Objective Advance Care Planning (ACP) is nationally a core element of adult and paediatric palliative care strategies. It is defined as a process of discussion between an individual, their care providers and those close to them, about future care.…

Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric…

Duchenne muscular dystrophy (DMD) is familiar to paediatricians as the most common childhood muscular dystrophy and leads to severe disability and early death in the late teenage years if untreated. Improvements in general care, glucocorticoid…

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:…

Ensuring a safe and effective transition of young people with chronic illness and disability from paediatric care to adult health services is a key quality issue for the NHS. To achieve this, three elements must be pursued with vigour. Firstly, a…

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…

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…

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…

Introduction Of the 74% of UK childhood deaths that occur in hospital, an increasing number-up to 65%-occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families,…

Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been…

Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for…

Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence…

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…

eizures are often initially treated at home. The standard treatment is rectal diazepam. Sublingual (SL) lorazepam is easy to administer but has not been well evaluated for efficacy in epilepsy. It has been reported to be effective for serial seizures…

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…

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…

AIMS: To determine the incidence, manifestations, and best management of sleep disturbance in Sanfilippo syndrome (mucopolysaccharidosis (MPS) type III). METHODS: Families were ascertained through the MPS societies of Australasia, the UK, and the…

AIMS: To determine the incidence, manifestations, and best management of sleep disturbance in Sanfilippo syndrome (mucopolysaccharidosis (MPS) type III). METHODS: Families were ascertained through the MPS societies of Australasia, the UK, and the…

BACKGROUND: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting…

Background Children with chronic illness and life limiting conditions are often more prone to respiratory illnesses due to problems with increased secretions and reduced ability to clear them. The aim of rapid response physiotherapists (RRP) in this…

The concordance of nasal compared with nasopharyngeal swabs was assessed for the diagnosis of respiratory viral infections, and the degree of discomfort associated with each procedure was compared. The use of nasal swabs was shown to be as accurate…

Background and aims Demise of a baby has profound consequences on the parents and providing appropriate support is the responsibility of multi-disciplinary team.1 Aim To compare the uptake of bereavement services between two tertiary neonatal units…

Background and aim Not all babies from whom neonatal intensive care (IC) is withdrawn die swiftly. We reviewed cases, characteristics, and outcomes of babies who unexpectedly survived for ≥1 week following IC withdrawal. Methods Retrospective review…

Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children…

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…

Chronic pain is an important clinical problem affecting significant numbers of children and their families. The severity and impact of chronic pain on everyday function is shaped by the complex interaction of biological, psychological and social…

Rarely do paediatric palliative medicine physicians have to break the news of a diagnosis of a life-limiting condition. It is much commoner for us to be faced with the question: "how long?". This cannot be answered with certainty, and yet a great…

Background Research shows that palliative care for children requires special attention and a coordinated approach to support the child and its entire family. In June 2012 a project was started in the Women’s and Children’s Clinic, Academic Medical…

Introduction Health professionals in neonatal intensive care units (NICUs) are regularly confronted with an infant’s imminent death. The death of a child is unnatural to parents and intensely affects them. Providing end-of-life care and follow-up…
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