Abstract:
:We aimed to describe the experiences of children and adolescents with congenital heart disease (CHD). Electronic databases were searched until August 2016. Qualitative studies of children's perspectives on CHD were included. Data was extracted using thematic synthesis. From 44 studies from 12 countries involving 995 children, we identified 6 themes: disrupting normality (denying the diagnosis, oscillating between sickness and health, destabilizing the family dynamic), powerlessness in deteriorating health (preoccupation with impending mortality, vulnerability to catastrophic complications, exhaustion from medical testing), enduring medical ordeals (traumatized by invasive procedures, disappointed by treatment failure, displaced by transition, valuing empathy and continuity in care, overcoming uncertainty with information), warring with the body (losing stamina, distressing inability to participate in sport, distorted body image, testing the limits), hampering potential and goals (feeling disabled, unfair judgment and exclusion, difficulties with academic achievement, limiting attainment and maintenance of life milestones), and establishing one's own pace (demarcating disease from life, determination to survive, taking limitations in their stride, embracing the positives, finding personal enrichment, relying on social or spiritual support). CONCLUSION:Children with CHD feel vulnerable and burdened by debilitating physical symptoms, unpredictable complications, and discrimination. Clinicians may support patients by sharing recognition of these profound psychosocial consequences. What is Known: • CHD is associated with difficulties in learning and attention, school absenteeism, decreased endurance, poor body image, and peer socialization • What is lesser known is how young patients cope with the symptoms, prognostic uncertainty, and treatment burden What is New: • We found that children are challenged by lifestyle restrictions, fear of invasive procedures, impaired body image, discrimination, and uncertainty about the future. Feelings of disempowerment are intensified by the unpredictability of disease progression • Thus, strategies to improve outcomes include improved patient education on disease and lifestyle management and partnership with school teachers and counselors for unique psychosocial support.
journal_name
Eur J Pediatrjournal_title
European journal of pediatricsauthors
Chong LSH,Fitzgerald DA,Craig JC,Manera KE,Hanson CS,Celermajer D,Ayer J,Kasparian NA,Tong Adoi
10.1007/s00431-017-3081-ysubject
Has Abstractpub_date
2018-03-01 00:00:00pages
319-336issue
3eissn
0340-6199issn
1432-1076pii
10.1007/s00431-017-3081-yjournal_volume
177pub_type
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journal_title:European journal of pediatrics
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doi:10.1007/BF00443367
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abstract::This parallel randomized controlled trial was aimed to evaluate whether parameters as physical fitness, reaction times, self-perception and enjoyment levels, as well as parental and children perspectives, were affected by active video games in inactive and technologically preoccupied children. Data were collected in a...
journal_title:European journal of pediatrics
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abstract:BACKGROUND:We aimed to determine the status of and factors associated with adolescent health care delivery and training in Europe on behalf of the European Paediatric Association-UNEPSA. MATERIALS AND METHODS:A questionnaire was mailed to the presidents of 48 national paediatric societies in Europe. For statistical an...
journal_title:European journal of pediatrics
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abstract::Children with symptomatic hypoglycemia and asymptomatic hypoglycemia-prone children were shown to differ in the degree of ketosis after a 20 h fast. In the latter children the close negative correlation between ketone body levels and glucose levels yielded a regression line against which the former children's data cou...
journal_title:European journal of pediatrics
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abstract::An Arab Moslem kindred is reported in which six abnormal male fetuses were born in three closely related sibships. They had amelia, malformed head and other severe skeletal and visceral malformations. The similarities and differences between the developmental and inherent characteristics found in our patients and in f...
journal_title:European journal of pediatrics
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journal_title:European journal of pediatrics
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abstract::Chemically defined or elemental medical foods provide the majority of protein equivalent in the diets of children treated for phenylketonuria (PKU). Because of the restricted intake of high biologic value protein, children with PKU often have lower than normal plasma concentrations of ferritin and zinc. Few reported s...
journal_title:European journal of pediatrics
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journal_title:European journal of pediatrics
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doi:10.1007/s00431-017-3070-1
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journal_title:European journal of pediatrics
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doi:10.1007/s00431-017-3049-y
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journal_title:European journal of pediatrics
pub_type: 杂志文章,多中心研究
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journal_title:European journal of pediatrics
pub_type: 杂志文章
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journal_title:European journal of pediatrics
pub_type: 杂志文章
doi:10.1007/s00431-013-2046-z
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journal_title:European journal of pediatrics
pub_type: 杂志文章
doi:10.1007/BF02113257
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journal_title:European journal of pediatrics
pub_type: 杂志文章,评审
doi:10.1007/pl00014375
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abstract::To reveal the influence of therapeutically induced changes of arterial blood pressure on cerebral circulation, pulsed Doppler measurements of blood velocity in the right internal carotid artery were performed in 23 neonates. A positive correlation between mean arterial blood pressure and time-averaged maximum blood ve...
journal_title:European journal of pediatrics
pub_type: 杂志文章
doi:10.1007/BF00441596
更新日期:1987-09-01 00:00:00
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journal_title:European journal of pediatrics
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doi:10.1007/s00431-017-3068-8
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abstract::Two patients with chronic granulomatous disease who had previously been intolerant to trimethoprim-sulfamethoxazole because of various adverse reactions completed a desensitisation protocol with a favourable clinical outcome. ...
journal_title:European journal of pediatrics
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doi:10.1007/s00431-002-0944-6
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abstract::Clinical, morphological, ultrastructural and immunological studies were performed in a case of congenital self-healing non-Langerhans cell histiocytosis. The patient showed several aspects that have not been published before: a large nodule in the vulvar region, vesiculobullous elements and pneumonia (asymptomatic). T...
journal_title:European journal of pediatrics
pub_type: 杂志文章
doi:10.1007/BF00441808
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abstract:UNLABELLED:The aim of this study was to assess whether the severity of congenital heart defects (CHD) affects disease-specific health-related quality of life (HRQOL) in children after open heart surgery. One hundred and fourteen children with CHD and one of their parents participated in the study. HRQOL was evaluated b...
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journal_title:European journal of pediatrics
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journal_title:European journal of pediatrics
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abstract:INTRODUCTION:Newborns with intrauterine growth retardation (IUGR) have multiple risk factors for developing hypoglycaemia. Hyperinsulinism, both transient and prolonged, is one of the major risk factors responsible for the hypoglycaemia observed in some newborns with IUGR. Once the child has progressed beyond the infan...
journal_title:European journal of pediatrics
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journal_title:European journal of pediatrics
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journal_title:European journal of pediatrics
pub_type: 杂志文章,多中心研究
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journal_title:European journal of pediatrics
pub_type: 杂志文章
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journal_title:European journal of pediatrics
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journal_title:European journal of pediatrics
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