Abstract:
BACKGROUND:Congenital lymphoedema is a lifelong condition that has detrimental physical and psychosocial outcomes for young patients and burdensome treatment responsibilities that may hamper patients' motivation for self-management. There is limited research from the perspective of young people with primary lymphoedema. We aimed to describe the experiences and views of children and adolescents with lymphoedema to inform patient-centred practice. METHODS:Twenty patients (aged 8-21 years) with primary lymphoedema were purposively sampled from two paediatric clinics in Sydney, Australia, to participate in a semistructured interview. The transcripts were analysed thematically. RESULTS:We identified six themes: reinforcing abnormality (damaging self-esteem, self-consciousness, frustrating restrictions and isolation); negotiating uncertainties (fearing condition worsening, deprioritised and sidelined, questioning cause and permanence, widespread unawareness); vulnerability and caution (avoiding pain and discomfort, preventing severe and permanent consequences, depending on permission, limiting goals and aspirations); disruptive transition (resisting change, losing progress and support, avoiding treatment costs); developing resilience (focusing on the positives, embracing individuality, recalibrating normality, prioritising coping) and taking responsibility (individualising treatment, needing support, external pressure and motivation, sticking to a routine, seeking independence). CONCLUSION:Children and adolescents learn to adjust to the daily demands of lymphoedema management by individualising and accepting their treatment, but many continue to struggle with their self-esteem and lifestyle restrictions. Strategies are needed to empower young patients to advocate for themselves during their transition to adult care. Treatment plans that minimise social restrictions, address emotional consequences and incorporate patients' preferences could improve adherence, satisfaction and outcomes.
journal_name
Arch Dis Childjournal_title
Archives of disease in childhoodauthors
Hanson CS,Newsom J,Singh-Grewal D,Henschke N,Patterson M,Tong Adoi
10.1136/archdischild-2017-313856subject
Has Abstractpub_date
2018-07-01 00:00:00pages
675-682issue
7eissn
0003-9888issn
1468-2044pii
archdischild-2017-313856journal_volume
103pub_type
杂志文章,多中心研究abstract::Acute viral respiratory illness during infancy has been implicated as a precursor for subsequent lower respiratory morbidity in childhood. A prospective, longitudinal study of respiratory function, airway responsiveness, and lower respiratory illness during early childhood was performed in a cohort of 253 healthy infa...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.72.1.16
更新日期:1995-01-01 00:00:00
abstract::During the 6-year period from 1 October 1971 to 30 September 1977, 13 (about 1%) of 1225 admissions to hospital with asthma developed severe ventilatory failure (peak arterial PCO 2 greater than 8 kPa). Mean age was 4.1 years (2.3--7.9), and on average each patient had been admitted to hospital on 5 occasions during t...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.53.9.714
更新日期:1978-09-01 00:00:00
abstract:OBJECTIVES:Children's exposure to racism via caregiver experience (vicarious racism) is associated with poorer health and development. However, the relationship with child healthcare utilisation is unknown. We aimed to investigate (1) the prevalence of vicarious racism by child ethnicity; (2) the association between ca...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2017-313866
更新日期:2018-09-01 00:00:00
abstract::During a meningococcal (group A) epidemic, 47 Nigerian children with acute meningococcaemia without meningitis were studied. Their mortality rate was 43% compared with 8% during the whole epidemic. Those presenting with coma and shock had a mortality of 93%, but without shock or coma mortality was only 6%. Coma or sho...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.54.1.44
更新日期:1979-01-01 00:00:00
abstract::This paper reviews the diagnostic features of cluster headache-like disorder and describes its presentation in childhood. Case note summaries of patients with this condition are presented in the context of a brief summary of the literature. Four patients (two girls; aged 12 to 15 years) with cluster headache-like diso...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.81.6.511
更新日期:1999-12-01 00:00:00
abstract:OBJECTIVES:To assess uptake of community-based capillary thyroid stimulating hormone (TSH) screening in Scotland and determine the optimal frequency of screening, the justification for preschool screening and strategies for treatment. METHODS:Subjects with Down's syndrome aged 1-19 years underwent capillary TSH measur...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2011-300124
更新日期:2011-12-01 00:00:00
abstract::Thirty jaundiced neonates with diarrhoea who were being treated with phototherapy and 30 matched control infants were studied to try and find out the cause of the diarrhoea. Faecal osmolality and electrolyte concentrations were measured, which gave clear evidence that the diarrhoea arose from intestinal secretion. Rec...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.64.8.1161
更新日期:1989-08-01 00:00:00
abstract::The utility of point-of-care lung ultrasound in neonatology is rapidly expanding. This review summarises current evidence of a diagnostic, procedural and observational tool valuable in the management of newborns requiring intensive care. Approaching a patient, probe in-hand with focused clinical question is essential,...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,评审
doi:10.1136/archdischild-2017-314538
更新日期:2019-09-01 00:00:00
abstract::Ketamine hydrochloride 2 mg/kg, together with atropine 0.2 mg, has been given intravenously on 100 occasions on a general paediatric ward. No serious side effects occurred. Dreams followed in 4 children but did not reduce acceptability of the drug. In our hands it has greatly reduced the pain and distress of children ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.51.1.56
更新日期:1976-01-01 00:00:00
abstract::In a cohort of 14 children with identical cardiac xenografts, two boys developed acute myeloid leukaemia 11 and 16 months respectively after the operation. A dedicated working group designed a scheme intending to take care of all aspects of the situation. This article focuses on preferred strategies towards patients, ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.88.5.435
更新日期:2003-05-01 00:00:00
abstract::One hundred of the 192 survivors of repaired oesophageal atresia at the Royal Children's Hospital, Melbourne, aged one year and over on 1 November 1973, were reviewed to determine the frequency of respiratory complications. 78 children suffered from more than 3 attacks of bronchitis per year during the first 3 years o...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.51.4.279
更新日期:1976-04-01 00:00:00
abstract:UNLABELLED:One hundred and seventy three children, including 93 with biliary atresia, received liver grafts at Addenbrooke's Hospital between 1983 and 1993. Of these, only seven developed cyanosis due to intrapulmonary shunting as a complication of their liver disease, and all seven of these had the biliary atresia/pol...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.70.6.501
更新日期:1994-06-01 00:00:00
abstract::The response of desamino-D-arginine vasopressin (DDAVP) was investigated in 32 enuretic children in a double-blind clinical study. The 15 children treated with DDAVP showed a significant reduction in the incidence of bed wetting--from 18.7 +/- 6.5 to 6.5 +/- 9.2 wet nights per 30 days. In 6 children bed wetting stoppe...
journal_title:Archives of disease in childhood
pub_type: 临床试验,杂志文章
doi:10.1136/adc.57.2.137
更新日期:1982-02-01 00:00:00
abstract::Intestinal D-fructose absorption in 31 children was investigated using measurements of breath hydrogen. Twenty five children had no abdominal symptoms and six had functional bowel disorders. After ingestion of fructose (2 g/kg bodyweight), 22 children (71%) showed a breath hydrogen increase of more than 10 ppm over ba...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.59.8.735
更新日期:1984-08-01 00:00:00
abstract::Two neonates with spontaneous rupture of the bladder and an otherwise normal genitourinary tract are described. Conservative management resulted in complete resolution of the lesion in one but the other child died from a coliform septicaemia. Necropsy showed a discrete ischaemic lesion in the fundus of the bladder. ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.60.7.676
更新日期:1985-07-01 00:00:00
abstract::A method for securing umbilical catheters is described. It has been used successfully in over 350 babies. It is a simple and rapid method that allows for easy repositioning and, unlike some established techniques, has no potential for damage to the preterm baby's skin. ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.63.7_spec_no.750
更新日期:1988-07-01 00:00:00
abstract:OBJECTIVE:To investigate whether school readiness could be affected by placing electronic devices (EDs) in children's bedroom and whether the relationship was moderated by parental restriction and family socioeconomic status (SES). DESIGN:This is a cross-sectional study with bedroom ED placement and parental restricti...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2017-312639
更新日期:2017-12-01 00:00:00
abstract::The prevalence of thyroid disease in 134 children, adolescents, and young adults with diabetes mellitus beginning in childhood is described. Clustering of a family history of thyroid disease and the presence of thyrogastric antibodies in some patients supports the concept of familial autoimmunity. In 4 children a diag...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.57.8.622
更新日期:1982-08-01 00:00:00
abstract::The recent famine in Ethiopia has resulted in the dislocation of millions of people. Many of these individuals have moved to refugee camps in Sudan or to feeding centres within Ethiopia. A total of 1325 children up to the age of 15 years were examined by an ophthalmologist in January 1985 at several sites in these two...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.61.11.1100
更新日期:1986-11-01 00:00:00
abstract:AIM:To investigate the safety of bronchoscopy and endobronchial biopsy in children with difficult asthma, and discuss the ethical issues associated with the procedure. METHODS:A three year prospective observational study was performed in two tertiary paediatric respiratory centres specialising in the management of chi...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,多中心研究
doi:10.1136/adc.84.5.423
更新日期:2001-05-01 00:00:00
abstract:OBJECTIVE:Investigate whether hyoscine patch or glycopyrronium liquid is more effective and acceptable to treat drooling in children with neurodisability. DESIGN:Multicentre, single-blind, randomised controlled trial. SETTING:Recruitment through neurodisability teams; treatment by parents. PARTICIPANTS:Ninety childr...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1136/archdischild-2017-313763
更新日期:2018-04-01 00:00:00
abstract::A quantitative morphological assessment was carried out of the cellularity and staining properties of the cells of the layers of the human cerebellar cortex, both in the normal child and in 41 children suffering from a series of disorders including mental retardation. A computerized image analyser and highly standardi...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.51.12.964
更新日期:1976-12-01 00:00:00
abstract:OBJECTIVE:Children with Down syndrome are at high risk of obstructive sleep apnoea (OSA) and screening is recommended. Diagnosis of OSA should be confirmed with multichannel sleep studies. We aimed to determine whether home pulse oximetry (HPO) discriminates children at high risk of OSA, who need further diagnostic mul...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/archdischild-2017-314409
更新日期:2018-10-01 00:00:00
abstract::The relationship of vesicoureteric reflex (VUR) and renal scarring was studied in 94 children (188 kidneys) with proved urinary tract infection in a district general hospital. There were 61 girls and 33 boys, with nine girls and 17 boys aged less than 1 year, 31 girls and nine boys aged between 1 and 5 years, the rema...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.66.11.1282
更新日期:1991-11-01 00:00:00
abstract::A questionnaire study regarding airway morbidity in children and environmental factors was performed in April 1985. The parents of 5301 children, aged 6 months to 16 years, from different rural areas in mid Sweden were sent a validated questionnaire and 4990 (94%) responded. The cumulative prevalence of bronchial hype...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.63.5.473
更新日期:1988-05-01 00:00:00
abstract::Hospital clowning is a programme in healthcare facilities involving visits from specially trained actors. In the paediatric intensive care unit (PICU), clowning may appear inappropriate and less intuitive. The patient could appear too ill and/or sedated, the environment too crowded or chaotic and the parents too stres...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,评审
doi:10.1136/archdischild-2016-311583
更新日期:2017-07-01 00:00:00
abstract::The allergic response is distinct from other immune reactions in its reliance on IgE, its high affinity receptor, Fc epsilon RI, and the primary effector cell--the tissue mast cell. Positive skin tests or raised concentrations of specific immunoglobulin E (IgE) in the serum define IgE sensitisation or "atopy". IgE par...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,评审
doi:10.1136/adc.88.1.71
更新日期:2003-01-01 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::A 9 year old girl with symptoms of the Sjögren syndrome showed interstitial lymphocytic infiltrate on renal biopsy. Two years later she had clinical and biological evidence of systemic lupus erythematosus, associated with a typical glomerulonephritis. ...
journal_title:Archives of disease in childhood
pub_type: 杂志文章
doi:10.1136/adc.59.2.175
更新日期:1984-02-01 00:00:00
abstract:BACKGROUND:Sweat testing procedures are perceived to vary widely. AIM:To evaluate variability in sweat collection, analysis, and interpretation. METHODS:Questionnaire responses from 30 self selected centres: 15 paediatric centres, and 15 district general hospitals. RESULTS:Centres carried out 30-400 tests per year (...
journal_title:Archives of disease in childhood
pub_type: 杂志文章,多中心研究
doi:10.1136/adc.82.5.425
更新日期:2000-05-01 00:00:00