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…
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…
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…
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…
Despite a great deal of effort and many articles addressing the end-of-life care of children and adults in intensive care units,1 2 paediatricians continue to be confronted by parents wanting “everything done”. Such an appeal is often construed by…
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 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…
Objective: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. Method(s): Comparative national longitudinal cohort study using linked primary and…
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…
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare…
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…
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…
Aim: To determine the effectiveness of an interdisciplinary cognitive behavioural treatment for adolescents with chronic pain. METHODS: Fifty seven adolescents (mean age 14.28 years) with chronic pain and 57 accompanying adults underwent an…
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve…
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,…
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…
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.
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…
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:…
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…
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…
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…
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),…
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…
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…
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.
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…
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).…
OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience…
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…
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…
Organ donation after euthanasia has been performed more than 70 times in Belgium and the Netherlands combined (personal communication, Jan Bollen, 2018). These two countries allow for euthanasia in minors as well, while Luxembourg, Colombia and…
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…
AIMS: To examine the frequency of and risk factors for bacteraemia in children hospitalised with respiratory syncytial virus (RSV) infection; and to determine current use of antibiotics in hospitalised children with RSV infection. METHODS:…
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…
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,…
