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…
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…
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…
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…
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
Purpose To describe the formation of a paediatric palliative care programme providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire. Study design Descriptive analysis was performed on referral…
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…
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…
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…
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…
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…
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative…
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:…
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…
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,…
In 1997 a review article on bisphosphonates in this journal identified 24 published articles relating to children at that time. Since then there has been a considerable increase in their use in clinical paediatric practice and research with there…
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…
AIDS accounted for approximately one quarter of all deaths in South Africa in 2000 and has become the country’s single biggest cause of death.1 Paediatric HIV infection is now a common cause of admission to hospital and a major contributor to…
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…
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 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).…
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…
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 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…
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…
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…
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…
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…
OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health…
Children with severe neurological impairment (such as cerebral palsy or congenital anomalies) are living longer, although medically complex, lives. Feeding intolerance is an increasing problem that is emerging as a new end-of-life issue. Long-term…
Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were…
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…
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 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…
BACKGROUND: Children with severe neurological impairment may have significant oral motor dysfunction and are at increased risk of nutritional deficiencies, poor growth, and aspiration pneumonia. Gastrostomy tube feeding is increasingly being used for…
