Quality of life in home-ventilated children and their families
| Autor: | Silvia Rodriguez, Catalina González, Miriam García, Diego Garcia, Olaia Sardón, Arturo Hernández, Ma Ángeles García-Teresa, Mercedes Herranz, Alicia Callejón Callejón, Rafael González, Jesús López-Herce, Amaya Bustinza, Antonio Niño Rodríguez, Alberto Medina, Antonio Salcedo, Mirella Gaboli, Juan D. Toledo, García S, Sarah N. Fernández, Estela Pérez, Ma Carmen Luna |
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| Rok vydání: | 2017 |
| Předmět: |
Adult
Male medicine.medical_specialty Adolescent Cross-sectional study media_common.quotation_subject Neglect 03 medical and health sciences Social support Perceived quality 0302 clinical medicine Quality of life 030225 pediatrics Health care medicine Health Status Indicators Humans Family 030212 general & internal medicine Child media_common business.industry Infant Social Support Mean age Home Care Services Respiration Artificial Family life Cross-Sectional Studies Caregivers Spain Child Preschool Family medicine Pediatrics Perinatology and Child Health Quality of Life Physical therapy Female business Attitude to Health |
| Zdroj: | European Journal of Pediatrics. 176:1307-1317 |
| ISSN: | 1432-1076 0340-6199 |
| Popis: | 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.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. |
| Databáze: | OpenAIRE |
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