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01-10-2017 | Original Article

Quality of life in home-ventilated children and their families

Authors: Rafael González, Amaya Bustinza, Sarah N. Fernandez, Miriam García, Silvia Rodriguez, Ma Ángeles García-Teresa, Mirella Gaboli, Silvia García, Olaia Sardón, Diego García, Antonio Salcedo, Antonio Rodríguez, Ma Carmen Luna, Arturo Hernández, Catalina González, Alberto Medina, Estela Pérez, Alicia Callejón, Juan D. Toledo, Mercedes Herranz, Jesús López-Herce, Spanish Children Home Mechanical Ventilation Multicentric Study Group

Published in: European Journal of Pediatrics | Issue 10/2017

Abstract

HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.

We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively.

Conclusions: 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.

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Title: Quality of life in home-ventilated children and their families
Authors: Rafael González
Amaya Bustinza
Sarah N. Fernandez
Miriam García
Silvia Rodriguez
Ma Ángeles García-Teresa
Mirella Gaboli
Silvia García
Olaia Sardón
Diego García
Antonio Salcedo
Antonio Rodríguez
Ma Carmen Luna
Arturo Hernández
Catalina González
Alberto Medina
Estela Pérez
Alicia Callejón
Juan D. Toledo
Mercedes Herranz
Jesús López-Herce
Spanish Children Home Mechanical Ventilation Multicentric Study Group
Publication date: 01-10-2017
Publisher: Springer Berlin Heidelberg
Published in: European Journal of Pediatrics / Issue 10/2017
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI: https://doi.org/10.1007/s00431-017-2983-z

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Quality of life in home-ventilated children and their families

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

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