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 understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care…
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…
Objectives: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care. Design(s): Longitudinal qualitative interview study…
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.
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…
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…
Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering…
Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A…
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.
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…
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…
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…
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…
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…
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 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…
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…
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…
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…
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…
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…
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…
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…
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…
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,…
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 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: 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…
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…
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…
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…
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…
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: 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:…
