The Quality of Life of Polish Children with Cerebral Palsy and the Impact of the Disease on the Family Functioning.


Journal

Journal of pediatric nursing
ISSN: 1532-8449
Titre abrégé: J Pediatr Nurs
Pays: United States
ID NLM: 8607529

Informations de publication

Date de publication:
Historique:
received: 28 10 2018
revised: 14 05 2019
accepted: 14 05 2019
pubmed: 4 6 2019
medline: 30 1 2020
entrez: 3 6 2019
Statut: ppublish

Résumé

Care and upbringing of a child with cerebral palsy (CP) may affect the functioning of parents and the whole family. This study aimed to evaluate the quality of life (QOL) of children with CP in parents' opinion and the impact of disease on family functioning. This cross-sectional study was conducted among 100 parents of children with CP. Survey instruments used included an Authors-Designed Questionnaire (ADQ) to collect sociodemographic and educational background data as well as four standardized questionnaires for pediatric QOL (PedsQL-GC, PedsQL-CPM, PedsQL-FIM) and for life satisfaction (SWLS). Teenagers were characterised by a higher QOL compared to other age groups. The lowest scores were observed in the PedsQL-CPM domain of daily and school activities and in the physical functioning domain of the PedsQL. It was shown that family functioning is affected by the children's age and place of residence as well as the level of parental education. It was also shown that men, parents in a relationship, those living in the city and those with vocational education were characterised by a higher level of satisfaction with life than other groups. The QOL of children with CP is reduced compared to the QOL of healthy children and their condition has a significant impact on family functioning. Therefore, learning about the factors that influence QOL will allow health care providers to properly plan actions aimed at minimising the negative impact of CP on children's QOL and improving the functioning of their families.

Identifiants

pubmed: 31153684
pii: S0882-5963(18)30493-7
doi: 10.1016/j.pedn.2019.05.011
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e75-e82

Informations de copyright

Copyright © 2019 Elsevier Inc. All rights reserved.

Auteurs

Aleksandra Kołtuniuk (A)

Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: aleksandra.koltuniuk@umed.wroc.pl.

Anna Rozensztrauch (A)

Department of Neonatology, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: anna.rozensztrauch@umed.wroc.pl.

Paulina Budzińska (P)

Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: p.budzinska@interia.eu.

Joanna Rosińczuk (J)

Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: joanna.rosinczuk@umed.wroc.pl.

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