Browse Items (111 total)

Aim-To investigate breathing rhythm and brain stem autonomic control in patients with Rett disorder. Setting-Two university teaching hospitals in the United Kingdom and the Rett Centre, Sweden. Patients-56 female patients with Rett disorder, aged…

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…

Developmental and behavioural characteristics were assessed in 27 children with cri du chat syndrome using the Society for the Study of Behavioural Phenotypes questionnaire, which gave information on prenatal and perinatal conditions, neurological…

A postal questionnaire was used to study 49 individuals with Cornelia de Lange syndrome (including both the classical and the mild forms) to ascertain behavioural phenotype. Ages ranged from early childhood to adulthood (mean age, 10.2 years; SD,…

This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular…

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…

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…

Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…

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…

Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal…

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 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.…

OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes…

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…

Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI).…

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…

Dystonia is a challenging neurological symptom found in paediatric palliative care (PPC).1 While well defined as a movement disorder characterised by sustained or intermittent muscle contractions associated with abnormal movement and posturing,…

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 and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence…

Background Technological advances have decreased PICU mortality but increased the number of children surviving with disability or technologically-dependent. Death in PICU most frequently follows withdrawal of life-sustaining therapy (LST),…

Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are…

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…

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:…

Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for…

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.…

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

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…

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 aims Recent audit found common practice in the UK is to restrict visitors on PICU to 2 adults, including parents, to ensure staff’s safe patient access. This requires nurses to take responsibility for bed space visitors, however, this…

Background and aims Many sources of conflict exist in intensive care units between family’s members, team–family, or within the ICU team. These conflicts are frequents (48%) in adults ICU, and most are in relation to end-of-life decisions especially…

Objective To describe the attitudes at the end-of-life decision (EOLD) making among Slovene paediatricians. Design A cross-sectional survey using questionnaire and case scenario. Setting Paediatric Health Care Institutions in Slovenia. Participants…

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…

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…

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…

OBJECTIVE: To review the literature on moral distress experienced by nursing and medical professionals within neonatal intensive care units (NICUs) and paediatric intensive care units (PICUs). DESIGN: Pubmed, EBSCO (Academic Search Complete, CINAHL…

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