Abstract:
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:Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis. SETTING:Community and hospital settings in the West Midlands, UK. PARTICIPANTS:Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members. FINDINGS:31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of 'fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden. CONCLUSIONS:There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.
journal_name
Arch Dis Childjournal_title
Archives of disease in childhoodauthors
Mitchell S,Slowther AM,Coad J,Dale Jdoi
10.1136/archdischild-2020-320189subject
Has Abstractpub_date
2020-11-16 00:00:00eissn
0003-9888issn
1468-2044pii
archdischild-2020-320189pub_type
杂志文章abstract::The use of the Bene-Anthony Family Relations Test is described and illustrated by three examples of child abuse. This test should be considered in the investigation of definite or suspected cases of abuse and as part of the preparation of court evidence. ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.52.9.708
更新日期:1977-09-01 00:00:00
abstract::Three cases of pseudoparalysis in infancy are reported in which the appearance of localized infection in the affected limb was delayed for a variable period after the onset of pseudoparalysis. Blood cultures on admission in all cases were positive, and bacteraemia due to the three organisms isolated is discussed. ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.50.12.953
更新日期:1975-12-01 00:00:00
abstract::Five cases of serious injuries to children wearing superhero costumes, involving extreme risk-taking behaviour, are presented here. Although children have always displayed behaviour seemingly unwise to the adult eye, the advent of superhero role models can give unrealistic expectations to the child, which may lead to ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.2006.109793
更新日期:2007-03-01 00:00:00
abstract::Using an electronic inhaler timer device (Nebulizer Chronolog), compliance with the prescribed frequency of inhaled prophylactic medication in 14 asthmatic children was measured. Underuse occurred in 55% of study days while overuse occurred in only 2%. Such devices provide an important new tool for investigating inhal...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.67.3.332
更新日期:1992-03-01 00:00:00
abstract:OBJECTIVE:To develop and test patient-reported experience measures (PREMs) for children and young people in a specialist paediatric hospital setting. DESIGN:Six PREMs were developed and tested by children and young people for children and young people aged 8-11, 12-13 and 14-16 years in inpatient and outpatient settin...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2017-313032
更新日期:2018-03-01 00:00:00
abstract::Parent reported pulse rates could provide important information on a child's clinical condition. The agreement between the parent's measurement of their child's pulse and a pulse oximeter was assessed following a brief educational intervention. Parents can be taught to measure the pulse of school age children, but hav...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.2002.025643
更新日期:2004-03-01 00:00:00
abstract::In a prospective study, 60% of admissions to an academic hospital were infected with HIV. HIV infected children were younger, less likely to have been referred, more likely to have pneumonia and candidiasis, and had more health service attendances. This impact may be alleviated by appropriate primary and secondary lev...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.85.1.50
更新日期:2001-07-01 00:00:00
abstract::In a study of 256 families, among whom were twins, midparent-adult son correlations for height, weight, and combined skinfold measurements were 0.67, 0.47, and 0.23 respectively. The corresponding midparent-adult daughter correlations were 0.63, 0.42, and 0.24. Midparent-growing offspring correlations were highest for...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.54.11.877
更新日期:1979-11-01 00:00:00
abstract::This paper describes 48 children, aged 14 years or less, who met diagnostic criteria for anorexia nervosa modified from Morgan and Russell. The characteristics of the sample (13 boys and 35 girls) are described along with features of the illness, associated family characteristics, treatment in hospital, and a brief de...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,评审
doi:10.1136/adc.62.2.114
更新日期:1987-02-01 00:00:00
abstract::Twenty children (age range 75 days-47 months) with reflux oesophagitis entered a random double blind trial in which they received either Cisapride (Janssen Pharmaceutical Ltd), a new prokinetic agent, or an identical placebo syrup. Diagnosis of gastro-oesophageal reflux was made by measurement of intraluminal oesophag...
journal_title:Archives of disease in childhood
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1136/adc.62.5.454
更新日期:1987-05-01 00:00:00
abstract::A percutaneous lung biopsy sample was used to diagnose interstitial lung disease in nine children aged less than 42 months. Fibrosing alveolitis was diagnosed in eight children and Pneumocystis carinii pneumonia in one child. Complications associated with the procedure were minimal and the results of the biopsy sample...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.70.2.143
更新日期:1994-02-01 00:00:00
abstract::Metabolites of vitamin D were measured in plasma from 83 patients with idiopathic infantile hypercalcaemia syndrome who were mentally handicapped but had normal calcium values at the time of the study. No significant difference was detected in the mean plasma concentrations of 25-hydroxyvitamin D2, 1,25-dihydroxyvitam...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.60.12.1140
更新日期:1985-12-01 00:00:00
abstract:OBJECTIVE:To define better the adult phenotype and natural history of Noonan syndrome. DESIGN:A prospective observational study of a large cohort. RESULTS:Data are presented for 112 individuals with Noonan syndrome (mean age 25.3 (range 12-71) years), who were followed up for a mean of 12.02 years. Mutations in PTPN1...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.2006.104547
更新日期:2007-02-01 00:00:00
abstract::Thirty preterm infants (gestational age 26 to 30 weeks) were investigated by cross sectional echocardiography using a 5 or 7.5 MHz transducer positioned in the suprasternal notch or the left subclavicular position to enable visualisation of the aortic arch, main pulmonary artery, left pulmonary artery, and ductus arte...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.59.4.341
更新日期:1984-04-01 00:00:00
abstract::Thyroxine (T4) screening values in infants of low birthweight in relation to birthweight and gestational age are reported. There were 86 healthy infants of low birthweight (group 1), and 29 preterm infants with respiratory distress syndrome (group 2). All the group 2 infants and 36% of those in group 1 had a T4 screen...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.58.3.190
更新日期:1983-03-01 00:00:00
abstract:OBJECTIVE:To determine if exploratory factor analysis can identify subtypes comprising recognisable clinical patterns of the presenting signs and symptoms of children with joint hypermobility syndrome (JHS). PATIENTS:Eighty-nine children with JHS aged 6-16 years. METHODS:Twelve tests comprising anthropometric, muscul...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2013-305304
更新日期:2015-01-01 00:00:00
abstract::The prevalence of wheezing, 'asthma', treatment for 'asthma', and school absence as a result of wheezing in Nottingham was calculated from a questionnaire survey of parents of 4750 children in a random sample of primary schools. A response was achieved for 3805 (80%) children of whom 438 (11.5%) had had episodes of wh...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.64.2.246
更新日期:1989-02-01 00:00:00
abstract::Partial splenectomy was performed on 30 patients with homozygous beta thalassaemia to reduce blood requirements and to avoid the risk of overwhelming postsplenectomy infections; 24 patients had thalassaemia major and six thalassaemia intermedia. Five patients received a high transfusion regimen before and after surger...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.65.3.304
更新日期:1990-03-01 00:00:00
abstract::An infant with severe hypertension who had a nephroblastoma which was secreting active renin is described. Nephroblastoma must be included in the differential diagnosis of hypertension associated with increased renin concentrations, even in the absence of an abdominal mass. ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.66.4.525
更新日期:1991-04-01 00:00:00
abstract::During the last half century there has been an exponential increase in international travel including to more exotic and long-haul destinations. The assessment of febrile returning child travellers presents diagnostic challenges and is often performed poorly. A detailed travel and medical history, clinical examination...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2012-303196
更新日期:2014-10-01 00:00:00
abstract::Insulin dependent diabetes mellitus presenting in children under five years old exhibits several clinical and management features that differ from diabetes presenting in older children. In this review of the current population of the Oxford children's diabetes clinic, children with diabetes diagnosed aged 0- less than...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.60.12.1144
更新日期:1985-12-01 00:00:00
abstract::Preductal and postductal oxygen saturation were compared in 20 ventilated preterm infants with hyaline membrane disease to establish the frequency of right to left shunting and to assess the accuracy of postductus arteriosus blood gas sampling. One hundred and thirty eight comparisons were made and the frequency of ri...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.67.10_spec_no.1166
更新日期:1992-10-01 00:00:00
abstract::Twenty two babies under 1 year old were referred for evaluation of suspected epileptic seizures. Nine were found to have epilepsy. In the other 13--all developing normally, aged up to 10 months--the spells were non-epileptic paroxysmal events (NEPE). They consisted of five patterns of movement: (1) eye blinking; (2) '...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.73.4.342
更新日期:1995-10-01 00:00:00
abstract::Histological examination of the breasts of 26 infants and young children who died suddenly between the ages of 3 weeks and 2 years was performed. The glands were composed of well formed lobules surrounded by dense interlobular stroma, while within the lobules there was looser connective tissue. The lobules contained d...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.63.2.136
更新日期:1988-02-01 00:00:00
abstract:OBJECTIVE:We assessed whether maternal mental health problems increased rates for child injury during the preschool years and mid-childhood, and the extent to which associations could be accounted for by a range of potential explanatory factors. DESIGN:We analysed the UK Millennium Cohort Study, a nationally represent...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2017-313809
更新日期:2019-03-01 00:00:00
abstract:OBJECTIVE:To examine the prevalence of dysnatraemias among children admitted for paediatric surgery before and after a change from hypotonic to isotonic intravenous maintenance fluid therapy. DESIGN:Retrospective consecutive time series intervention study. SETTING:Paediatric surgery ward at the Children's Hospital in...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2019-318555
更新日期:2020-10-28 00:00:00
abstract::The age at which retinopathy of prematurity was first seen was determined in 143 infants. In all, the initial ophthalmological examination was normal. Birth weights varied from 630 to 2700 g and gestational ages from 24.5 to 40.0 weeks. The median postnatal age at which acute retinopathy of prematurity was first seen ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.61.8.774
更新日期:1986-08-01 00:00:00
abstract::During a screening programme of 10000 pregnant women by the Guthrie test, a previously unrecognised phenylketonuric woman was detected. A low phenylalanine diet introduced from the 16th week of gestation failed to prevent fetal abnormality and mental retardation. Maternal phenylketonuria requires earlier diagnosis tha...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.55.8.634
更新日期:1980-08-01 00:00:00
abstract::Among 40 hospitalized infants and children with cytomegalovirus infection, 14 (35%) had interstitial pneumonitis, 4 (10%) had wheezing or tachypnoea but without x-ray evidence of classical interstitial pneumonia, the remaining 22 (55%) were free of pulmonary involvement. Most patients had tachypnoea and nonproductive ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.52.6.441
更新日期:1977-06-01 00:00:00
abstract::The effect of indomethacin treatment of patent ductus arteriosus (PDA) on blood pressure was studied in 24 preterm infants. PDA was diagnosed clinically and confirmed by echocardiography; the effect of treatment was monitored echocardiographically. Hourly intra-arterial recordings of systolic, diastolic, and mean bloo...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.68.5_spec_no.584
更新日期:1993-05-01 00:00:00