Quality of life in home-ventilated children and their families.
Rafael GonzálezAmaya BustinzaSarah N FernandezMiriam GarcíaSilvia RodriguezMa Ángeles García-TeresaMirella GaboliSilvia GarcíaOlaia SardónDiego GarcíaAntonio SalcedoAntonio RodríguezMa Carmen LunaArturo HernándezCatalina GonzálezAlberto MedinaEstela PérezAlicia CallejónJuan D ToledoMercedes HerranzJesús López-Hercenull nullPublished in: European journal of pediatrics (2017)
Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.
Keyphrases
- young adults
- mechanical ventilation
- healthcare
- intensive care unit
- physical activity
- type diabetes
- cardiovascular disease
- acute respiratory distress syndrome
- palliative care
- end stage renal disease
- ejection fraction
- social support
- chronic pain
- extracorporeal membrane oxygenation
- peritoneal dialysis
- patient reported outcomes