Quality of life in home-ventilated children and their families.
Eur J Pediatr
; 176(10): 1307-1317, 2017 Oct.
Article
em En
| MEDLINE
| ID: mdl-28803432
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Respiração Artificial
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Atitude Frente a Saúde
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Família
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Cuidadores
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Serviços de Assistência Domiciliar
Tipo de estudo:
Clinical_trials
/
Etiology_studies
/
Observational_studies
/
Prevalence_studies
/
Qualitative_research
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Risk_factors_studies
Limite:
Adolescent
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Adult
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Child
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Child, preschool
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Female
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Humans
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Infant
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Male
País/Região como assunto:
Europa
Idioma:
En
Revista:
Eur J Pediatr
Ano de publicação:
2017
Tipo de documento:
Article
País de afiliação:
Espanha