Aleksandra Kołtuniuk1, Anna Rozensztrauch2, Paulina Budzińska3, Joanna Rosińczuk4. 1. Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: aleksandra.koltuniuk@umed.wroc.pl. 2. Department of Neonatology, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: anna.rozensztrauch@umed.wroc.pl. 3. Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: p.budzinska@interia.eu. 4. Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland. Electronic address: joanna.rosinczuk@umed.wroc.pl.
Abstract
PURPOSE: 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. DESIGN AND METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.
PURPOSE: 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. DESIGN AND METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.
Authors: Kelvin Ying; Hans Van Rostenberghe; Garry Kuan; Mohammad Haris Amirul Mohd Yusoff; Siti Hawa Ali; Nik Soriani Yaacob Journal: Int J Environ Res Public Health Date: 2021-02-28 Impact factor: 3.390