Milićević Milena
Institute of Criminological and Sociological Research, Belgrade, Serbia.
Child Care Health Dev. 2023 Jan;49(1):62-72. doi: 10.1111/cch.13007. Epub 2022 Mar 28.
Caregivers' reports often serve as a decision-making guide in the treatment and rehabilitation of children with cerebral palsy (CP). This study identified predictors of the caregiver-reported health-related quality of life (HRQoL) of school-age children with CP.
A cross-sectional study was conducted using the convenience sample of 108 children with CP (60 males; aged 7-18 years; mean age 12 years 8 months [SD 3 years 5 months]). Caregivers reported their child's HRQoL using KIDSCREEN-27. Standard multiple regression analyses were conducted to test if the child characteristics (gender, age, Gross Motor Function Classification System-Expanded & Revised [GMFCS-E&R], Manual Ability Classification System [MACS], intellectual disability, health problems, communication, social skills, behavioural difficulties); family characteristics (income, type, home adaptation); physical, social and attitudinal barriers; environmental features; and family-centeredness of service delivery significantly predicted HRQoL.
Fine manual abilities, home adaptation and the magnitude of barriers predicted physical well-being. The child's challenging behaviour, the magnitude of barriers and the barriers related to different policies predicted psychological well-being. The home adaptation level and provision of general information about the child's disability and available types of services predicted HRQoL domain related to interactions and relationships with parents. Children with behavioural difficulties and more severe limitations in communication had less social support from friends and peers. The social skills and intellectual functioning combined with the parental ratings of the child's behaviour, other people's attitudes towards the child and the lack of support predicted HRQoL in the School Environment domain. The magnitude and frequency of barriers were the strongest predictors of general HRQoL.
From the caregivers' perspective, home adaptation, supportive laws and policies and family-centred rehabilitation care that meets the family needs may promote children's HRQoL. Specific interventions addressing modifiable environmental features and continuous support to children in improving their fine motor abilities, communication and social skills and families in managing behavioural difficulties may be relevant for HRQoL of school-age children with CP.
在脑瘫(CP)患儿的治疗和康复过程中,照顾者的报告常作为决策指南。本研究确定了照顾者报告的学龄期脑瘫患儿健康相关生活质量(HRQoL)的预测因素。
采用便利抽样法对108例脑瘫患儿(60例男性;年龄7 - 18岁;平均年龄12岁8个月[标准差3岁5个月])进行横断面研究。照顾者使用儿童生活质量量表27项版(KIDSCREEN - 27)报告其孩子的HRQoL。进行标准多元回归分析,以检验儿童特征(性别、年龄、粗大运动功能分类系统扩展与修订版[GMFCS - E&R]、手动能力分类系统[MACS]、智力残疾、健康问题、沟通、社交技能、行为困难);家庭特征(收入、类型、家庭适应性);身体、社会和态度障碍;环境特征;以及以家庭为中心的服务提供是否能显著预测HRQoL。
精细手动能力、家庭适应性和障碍程度可预测身体健康状况。儿童的挑战性行为、障碍程度以及与不同政策相关的障碍可预测心理健康状况。家庭适应水平以及提供有关儿童残疾和可用服务类型的一般信息可预测与与父母互动及关系相关的HRQoL领域。有行为困难且沟通能力受限更严重的儿童从朋友和同龄人那里获得的社会支持较少。社交技能和智力功能,再加上父母对孩子行为的评价、他人对孩子的态度以及缺乏支持,可预测学校环境领域的HRQoL。障碍的程度和频率是总体HRQoL的最强预测因素。
从照顾者的角度来看,家庭适应、支持性法律法规以及满足家庭需求的以家庭为中心的康复护理可能会提高儿童的HRQoL。针对可改变的环境特征的具体干预措施,以及持续支持儿童提高精细运动能力、沟通和社交技能,支持家庭管理行为困难,可能对学龄期脑瘫患儿的HRQoL有帮助。