Department of Nervous System Diseases, Faculty of Health Sciences, Wroclaw Medical University, Poland.
Department of Neonatology, Faculty of Health Sciences, Wroclaw Medical University, Poland.
J Pediatr Nurs. 2019 Jul-Aug;47:e75-e82. doi: 10.1016/j.pedn.2019.05.011. Epub 2019 May 29.
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.
脑瘫（CP）患儿的护理和养育方式可能会影响父母和整个家庭的功能。本研究旨在评估父母对脑瘫患儿生活质量（QOL）的看法，以及疾病对家庭功能的影响。
这是一项横断面研究，纳入了 100 名脑瘫患儿的家长。使用的调查工具包括作者设计的问卷（ADQ），用于收集社会人口学和教育背景数据，以及四个标准化的儿科生活质量问卷（PedsQL-GC、PedsQL-CPM、PedsQL-FIM）和生活满意度问卷（SWLS）。
青少年的生活质量比其他年龄组更高。在 PedsQL-CPM 日常生活和学校活动领域以及 PedsQL 身体功能领域的得分最低。研究表明，家庭功能受到儿童年龄、居住地以及父母教育程度的影响。研究还表明，男性、处于恋爱关系中的父母、居住在城市的父母和接受职业教育的父母比其他群体的生活满意度更高。
脑瘫患儿的生活质量较健康儿童降低，其病情对家庭功能有显著影响。因此，了解影响生活质量的因素将使医疗保健提供者能够合理规划旨在尽量减少 CP 对儿童生活质量的负面影响并改善其家庭功能的措施。
