Social support and adaptation outcomes in children and adolescents with cerebral palsy

Abstract

Objectives: This study had two main objectives: first, to describe the social support and psychological maladjustment of children and adolescents with cerebral palsy (CP); and second, to test a mediation model where psychological maladjustment was hypothesized to mediate the link between social support and health-related quality of life (HRQL). In addition, the moderating role of gender and age was examined for this mediation model. Methods: Self- and proxy-report questionnaires on the aforementioned variables were administered to a sample of 96 children/adolescents with CP and 118 healthy controls, as well as one of their parents. Univariate and multivariate analyses of covariance were conducted to examine differences in social support and psychological maladjustment, respectively. PROCESS computational tool was used for path analysis-based mediation, moderation and moderated mediation analyses. Results: Children/adolescents with CP reported lower levels of social support than their healthy peers, but no significant differences emerged in terms of their psychological maladjustment. For children/adolescents with CP, internalizing and externalizing problems were found to mediate the link between social support and HRQL, and these indirect effects were not conditional upon age or gender. Discussion: Children and adolescents with CP are likely have more negative perceptions of social support, but not necessarily more psychological adjustment problems than their healthy, able-bodied peers. Results further suggest that interventions targeting social support perceptions may positively affect HRQL outcomes in children/adolescents with CP, through the improvement of internalizing and externalizing dimensions of their psychological adjustment.

• Implications for Rehabilitation

• Social support perceptions are important intervention targets in psychosocial rehabilitation with children and adolescents with CP.

• Children and adolescents with CP do not necessarily present increased psychological maladjustment.

• Interventions targeting these children and adolescents’ social support may promote their psychological adjustment and health-related quality of life.

• Developmental specificities, such as age and gender differences, should be considered when planning and implementing psychosocial interventions.

     

Randomized controlled trial of a web-based multi-modal therapy program for executive functioning in children and adolescents with unilateral cerebral palsy

Purpose state: Determine the efficacy of Move-it-to-improve-it (Mitii?), a multi-modal web-based program, in improving Executive Function (EF) in children with unilateral cerebral palsy (UCP).

Method: Participants (n?=?102) were matched in pairs then randomized to: intervention (Mitii? for 20 weeks; n?=?51; 26 males; mean age?=?11 years 8 months (SD?=?2 years 4 months); Full Scale IQ?=?84.65 (SD?=?15.19); 28 left UCP; GMFCS-E&;R (I?=?20, II?=?31) or waitlist control (n?=?50; 25 males; mean age?=?11 years 10 months (SD?=?2 years 5 months); Full Scale IQ?=?80.75 (SD?=?19.81); 20 left UCP; GMFCS-E&;R (I?=?25, II?=?25). Mitii? targeted working memory (WM), visual processing (VP), upper limb co-ordination and physical activity. EF capacity was assessed: attentional control (DSB; WISC-IV); cognitive flexibility (inhibition and number-letter sequencing DKEFS); goal setting (D-KEFs Tower Test); and information processing (WISC-IV Symbol Search and Coding). EF performance was assessed via parent report (BRIEF). Groups were compared at 20 weeks using linear regression (SPSS 21).

Results: There were no significant between group differences in attentional control (DSB; p?=?0.20;CI=??0.40,1.87); cognitive flexibility (Inhibition, p?=?0.34; CI=??0.73,2.11; number/letter sequencing, p?=?0.17; CI=??0.55,2.94); problem solving (Tower; p?=?0.28; CI=??0.61,2.09), information processing (Symbol; p?=?0.08; CI=??0.16, 2.75; Coding; p?=?0.07; CI=??0.12,2.52) or EF performance (p?=?0.13; CI=??10.04,1.38).

Conclusion:In a large RCT, Mitii^TM did not lead to significant improvements on measures of EF or parent ratings of EF performance in children with UCP.

• Implications for rehabilitation

• A large RCT of the multi-modal web based training; Move It to Improve It (Mitii^TM) improves motor processing, visual perception, and physical capacity but does demonstrate statistically significant improvements or clinical significance in executive function in children with mild to moderate unilateral cerebral palsy (UCP).

• Mitii^TM training completed by an intervention group was highly variable with few children reaching the target dosage of 60?h. Technical issues including server and internet connectively problems lead to disengagement with the program.

• Web-based training delivered in the home has the potential to increase therapy dose and accessibility, however, Mitii^TM needs to be tailored to include tasks involving goal-setting, more complex problem solving using multi-dimensional strategies, mental flexibility, switching between two cognitively demanding tasks, and greater novelty in order to increase the cognitive component and challenge required to drive changes in EF.

     

脑瘫患儿气质特征研究

目的探讨脑瘫患儿气质特征。方法采用修订的Carey儿童气质问卷中文电子软件版 ,对 3 64例 4个月— 7岁脑瘫患儿进行气质分析 ,比较不同临床类型、独走和未独走患儿气质特征。结果脑瘫患儿有明显消极气质 ,表现为活动性低、注意力欠集中、坚持性差、情绪本质消极等 ;痉挛型双瘫和徐动型患儿趋避性有明显区别 ;不同智力水平脑瘫患儿未见气质差异 ;不能独走患儿的消极气质明显。结论脑瘫患儿有明显的消极气质。     

脑性瘫痪儿童青少年全身振动干预的健康和功能结局：基于WHO-FICs的系统综述

目的 基于世界卫生组织国际分类家族(WHO-FICs)的理论与方法,构建脑瘫儿童青少年全身振动训练的健康和功能结局研究架构,系统综述脑瘫儿童青少年的主要健康状况和身体功能、全身振动训练的干预方案以及振动干预的健康和功能结局。方法 基于WHO-FICs方法,构建系统综述的PICO架构,检索中国知网、万方、PubMed、Web of Science、EBSCO、Embase等数据库,收集建库至2022年9月30日关于全身振动训练对脑瘫儿童青少年健康状况与功能效果的随机对照试验,进行系统综述。结果 最终纳入文献8篇,其中英文7篇,中文1篇,分别来自5个国家,主要来源于临床康复、神经康复、物理医学与康复等相关领域期刊,发表时间集中在2010年以后,涉及227例参与者(3～12.3岁)。纳入文献物理治疗证据数据库量表评分平均6分。诊断ICD-11编码涉及08神经系统疾病、8D20痉挛型脑瘫、8D20.1痉挛型双侧脑瘫、8D20.10痉挛型四肢瘫脑瘫、8D2Z未特指的脑瘫。主要功能障碍在身体功能方面表现为肌肉痉挛、骨骼发育异常、关节畸形和肌肉无力,选择性运动控制下降以及步态异常;在活动和参与方面表...     

Stages of change in physical activity behavior in children and adolescents with cerebral palsy

Abstract

Purpose: To identify facilitators and barriers frequently experienced by families of children with cerebral palsy (CP) and associated with being at the pre-intention, intention and action stages for physical activity. Method: Qualitative study involving in-depth focus group interviews with 33 ambulatory children and adolescents with CP and their parents (n?=?33). These interviews were followed by questionnaires to determine stage of behavior change (i.e. pre-intention, intention and action) related to the child’s participation in physical activity. Results: Families who were classified in the intention stage of behavioral change were more likely to identify environmental barriers related to the social environment and the facility or program than parents at the pre-intention stage. Families who were classified into intention and action stages were more likely to identify facilitators related to parental factors than families at the pre-intention stage. Moreover, at the action stage facilitators were related to the facility/program. Conclusions: The identified facilitators and barriers, organized according to three stages of change (pre-intention, intention and action), provide important theoretical insights into how and why children and adolescents with CP and their parents might change their physical activity behavior.

• Implications for rehabilitation

• Understanding the barriers and facilitators of physical activity for children and adolescents with CP is essential for designing effective interventions to promote participation in this group.

• Using the three stages of change and the identified barriers and facilitators for participation can result in tailored advice to increase physical activity behavior.

     

弓形虫感染致小儿脑性瘫痪的危险性分析

目的探讨先天性弓形虫感染与儿童患脑性瘫痪发生的关联性。方法 2 3 6例脑瘫患儿作为病例组 ,42 8例正常儿童作为对照组。将所有研究的病例按年龄分层为 4组 :～ 3月、～ 6月、～ 9月、～ 12月组 ,血弓形虫DNA(TOX DNA)、弓形虫循环抗原 (TOX CAG)、血弓形虫抗体IgM (TOX IgM )中 1项或 1项以上阳性 ,并排除其他的先天性感染疾病者确定诊断。 结果在～ 3月 ,～ 6月 ,～ 9月 3组儿童中 ,其相对危险度 (OR)与 95 %置信区间 (CI)分别为 :10 13、3 74— 2 7 42 ,7 71、2 45— 2 4 2 8,8 84、1 85— 42 3 1,均P <0 0 1。在～ 12月组中 ,OR =4 3 0 ,CI :0 83— 2 2 2 8,P >0 0 5。结论在病例组儿童中 ,存在弓形虫感染与脑瘫之间的关联性 ;检出弓形虫感染时年龄越小 ,发生脑瘫的危险性越大     

436例脑瘫患儿的脑电图分析

目的 :探讨脑瘫患儿的脑电图与脑瘫型别、瘫痪类型、脑瘫程度及并发症之间的关系。方法 :采用国际 10 / 2 0导系统电极放置法 ,为 436例脑瘫患儿做脑电图检查和分析。结果 :脑瘫患儿的脑电图异常率为 72 .7% ,手足徐动型脑瘫的脑电图异常率较低 ,偏瘫组的脑电图异常率较高 ,重度脑瘫组的脑电图异常率较高 ,伴有癫痫发作、智力障碍、小头畸形患儿的脑电图异常率较高。结论 :脑瘫患儿的脑电图异常率与大脑损伤的部位和程度有关。     

超声成像技术在痉挛型脑性瘫痪患儿腓肠肌定量评定中的应用

目的 探讨临床应用超声弹性成像定量评估痉挛型脑瘫患儿腓肠肌的形态结构及生物力学特性的可行性。 方法 2020年12月至2021年12月,选取深圳市儿童医院康复医学科治疗的痉挛型脑瘫(偏瘫或双瘫)患儿36例为试验组,同期招募年龄、性别匹配的健康儿童30例为对照组。二维灰阶高频超声及剪切弹性成像检查试验组偏瘫侧或肌张力较高一侧、对照组随机一侧的腓肠肌内侧头,记录肌肉厚度(MT)、肌纤维长度(FL)、羽状角(PA)和剪切波速度(SWV)。采用改良Ashworth量表(MAS)和粗大运动功能测试(GMFM)评估试验组腓肠肌肌张力和粗大运动功能。 结果 试验组腓肠肌内侧头MT、FL显著小于对照组(|t| > 3.937,P < 0.001),PA、SWV显著大于对照组(|t| > 6.105,P < 0.001)。试验组MT、FL与GMFM评分呈正相关(r > 0.391, P < 0.05),SWV与MAS评分呈正相关(r = 0.734, P < 0.001)。 结论 超声成像可用于量化评估痉挛型脑瘫患儿腓肠肌的形态和硬度。     

Fundamental movement skills testing in children with cerebral palsy

Purpose.?To examine the inter-rater reliability and comparative validity of product-oriented and process-oriented measures of fundamental movement skills among children with cerebral palsy (CP).

Method.?In total, 30 children with CP aged 6 to 14 years (Mean == 9.83, SD == 2.5) and classified in Gross Motor Function Classification System (GMFCS) levels I–III performed tasks of catching, throwing, kicking, horizontal jumping and running. Process-oriented assessment was undertaken using a number of components of the Test of Gross Motor Development (TGMD-2), while product-oriented assessment included measures of time taken, distance covered and number of successful task completions. Cohen's kappa, Spearman's rank correlation coefficient and tests to compare correlated correlation coefficients were performed.

Results.?Very good inter-rater reliability was found. Process-oriented measures for running and jumping had significant associations with GMFCS, as did seven product-oriented measures for catching, throwing, kicking, running and jumping. Product-oriented measures of catching, kicking and running had stronger associations with GMFCS than the corresponding process-oriented measures.

Conclusion.?Findings support the validity of process-oriented measures for running and jumping and of product-oriented measures of catching, throwing, kicking, running and jumping. However, product-oriented measures for catching, kicking and running appear to have stronger associations with functional abilities of children with CP, and are thus recommended for use in rehabilitation processes.     

小脑电刺激对脑性瘫痪儿童康复作用的初步评价

目的观察电刺激小脑对脑性瘫痪(脑瘫)儿童的康复作用。方法小脑电刺激组:采用小脑电刺激治疗;神经生理学疗法(Bobath+Vojta)+康复中心训练;康复组:执行神经生理学疗法+康复中心训练;对照组仅由治疗师上午执行30min神经生理学疗法,其余时间指导家长在家康复。疗程均为3个月。结果小脑电刺激组法效果较为理想。结论小脑电刺激可作为脑瘫康复的较好手段之一。     

引导式教育模式在脑瘫儿童康复治疗中的应用研究

文章归纳了引导式教育模式在脑瘫儿童康复研究中的关键问题,阐述了引导式教育的基本内涵,适应范围与评价特点,指出了几种开展模式在脑瘫领域中的建立、应用与效果的研究现状。在此基础上,对引导式教育研究前景进行了展望。     

Activity training on the ground in children with cerebral palsy: Systematic review and meta-analysis

Purpose: To systematically review the evidence about whether activity training on the ground is effective on activity or participation in children with cerebral palsy. Methods: Randomized controlled trials (RCTs) were searched in databases using relevant keywords. RCTs were included with children (≤18 years) with cerebral palsy who received activity training on the ground only or activity training on the ground combined with another type of physiotherapy. Outcome measures classified as measures of activity or participation according to the International Classification of Functioning, Disability, and Health were analyzed. Results: Nine RCTs (257 participants) were included in this review. Individual studies resulted in conflicting results when activity training on the ground was compared to no intervention. Based on meta-analysis, activity training on the ground was not more effective than no intervention (standardized mean difference [SMD]: 0.18; confidence interval [CI]: ?1.49 to 1.86) or other therapies (SMD: ?0.09; CI: ?0.86 to 0.69) (I² > 75%) on improving activity or participation. Results from a single study demonstrated that activity training on the ground combined with other physiotherapy intervention was not more effective than no intervention (SMD: ?0.18 CI: ?0.89 to 0.54). Conclusions: The available evidence shows little effect of activity training on the ground on activity or participation in children with cerebral palsy, suggesting that rigorous trials with larger samples and larger “dosage” of activity training on the ground are needed in the future.     

上田正法治疗脑性瘫痪儿童的疗效初步评价

目的通过对上田正法的应用,探讨及评价治疗脑性瘫痪(CP)儿童的新方法。方法对22例8个月～10.8岁的CP儿作治疗前,后的运动功能变化进行动态观察及量化评价,并以同期年龄相对应的15例CP儿应用Vojta等法治疗作对照(包括单用上田正法11例,单用Vojta等法4例,自身对照11例,即先用Vojta法后用上田正法）。结果上田正法治疗后运动功能发育评价较治疗前增加10分,Vojta等法治疗后增加8分/月(P>0.05）。对重度,极重度CP儿两种方法分别增加11分/月,7分/月(P<0.05）。结论上田正法亦是治疗小儿CP的有效方法,且优于Vojta等法,尤其是对以前Vojta等法较棘手的重度CP儿也有较好的疗效。     

瑜伽练习对学龄期脑瘫儿童运动功能的影响

目的:探讨瑜伽练习对学龄期脑瘫儿童运动功能的影响。方法:将痉挛型双瘫脑瘫儿童随机分为瑜伽组(15例)及对照组(15例)。2组均接受常规康复训练,瑜伽组在常规康复训练中融入瑜伽练习。分别于治疗前后采用Berg平衡功能(BBS评分),粗大运动功能量表-88项(GMFM-88)站立(D区)、走跑跳(E区)两大功能区评定,并采用步态评估。结果:治疗后,2组CP儿童BBS评分均较治疗前显著提高(P0.01),且瑜伽组得分高于对照组(P0.05);2组GMFM(D、E区)评分也均较治疗前显著上升(P0.01),且瑜伽组显著优于对照组(P0.01)。治疗后,2组儿童的步速、步幅较治疗前明显提高(P0.01),双支撑相较治疗前明显降低(P0.01),且瑜伽组上述指标改善更优于对照组(P0.05)。结论:瑜伽练习可以提高学龄期脑瘫儿童平衡能力和粗大运动功能,有利于步态的改善。     

重复经颅磁刺激治疗脑瘫患儿的疗效观察

目的:观察重复经颅磁刺激(rTMS)联合康复训练治疗脑瘫患儿的疗效,探讨此治疗方法对脑瘫儿童综合功能的促进作用。方法:将42例脑瘫患儿随机分为2组各21例,2组脑瘫儿童均接受康复治疗,包括PT训练、OT训练、语言训练、特殊教育等项目;观察组在康复训练的基础上增加rTMS。2组患儿在康复治疗前后进行粗大运动功能分级系统(GMFM)和Gesell发育诊断量表检查评定。结果:治疗8周后,2组患儿GMFM评分5个维度均较治疗前有提高,其中维度A、维度B、维度C、维度D组内比较均有显著性差异(P<0.05);治疗后组间比较,维度A及维度C 2组间比较有显著性差异(P<0.05)。治疗8周后,2组患儿组内比较显示Gesell评分5个能区均有提高,其中大运动能区、精细动作能区、语言能区组内比较有显著性差异(P<0.05);治疗后组间比较,观察组大运动能区及语言能区较对照组提高得更明显(P<0.05)。结论:rTMS联合康复训练治疗脑瘫的效果肯定,可以促进患儿运动功能和语言功能发育。     

Social media experiences of adolescents and young adults with cerebral palsy who use augmentative and alternative communication

Purpose: This pilot study aimed to expand the current understanding of how adolescents and young adults with cerebral palsy (CP) and complex communication needs use social media.

Method: An online focus group was used to investigate the social media experiences of seven individuals with CP who used Augmentative and Alternative Communication (AAC). Questions posed to the group related to social media: (a) advantages; (b) disadvantages; (c) barriers; (d) supports; and (e) recommendations.

Result: Adolescents with CP who use AAC used a range of communication media to participate in daily interactions, including social media. An analysis of the focus group interaction revealed that the participants used social media to: bypass the constraints of face-to-face interactions; communicate for a number of reasons (e.g. maintain relationships, share experiences); and support independent leisure (e.g. playing games, looking at pictures/videos). Despite the advantages, the participants discussed barriers including limitations related to AAC technologies, social media sites and literacy skills.

Conclusion: The results suggest that service providers should implement interventions to support social media use, including enhancement of linguistic, operational and strategic competence. Technology manufacturers should focus on improving the designs of AAC apps and social media sites to facilitate access by individuals who require AAC.     

The health of children with cerebral palsy and stress in their parents

Title.  The health of children with cerebral palsy and stress in their parents.
Aim.  This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents.
Background.  Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health.
Method.  A cross-sectional survey with home visits using standard questionnaires was administered to parents in 2004–05. A total of 102/199 (51%) children and parents participated. The children were compared with a normative sample.
Results.  Children with cerebral palsy had poorer physical health, and 79% of parents reported that their child had moderate to severe pain. Their poorer health, in comparison with the normal sample and measured by the Child Health Questionnaire, was related to feeding problems and seizures, general health perceptions to intellectual and feeding impairment, and family activities with severe motor, intellectual and feeding impairment. Poorer psychological well-being on the hyperactivity domain of the Strengths & Difficulties Questionnaire was related to feeding difficulties, on the prosocial domain to more severe forms of all child impairments, and on the social impairment scale to intellectual impairment. Children with psychological problems had statistically significantly increased odds (OR = 7·2, 95% CIs 2·6–20·3) of having parents with high stress.
Conclusion.  Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support.     

辅助器具在小儿脑性瘫痪康复中的选用探讨

本文针对小儿脑性瘫痪(脑瘫)康复中辅助器具的作用和选用进行探讨,并介绍了60多种供个人使用和训练用的相关辅助器具。在小儿脑瘫的康复过程中需要应用辅助器具来改善脑瘫患儿的功能障碍、帮助建立正常的运动模式、防止畸形进一步加重和提高他们的生活自理能力。为此着重提出了小儿脑瘫肢体残疾辅助器具选用时要考虑的3个因素即按照儿童运动发育规律、按照脑瘫儿功能障碍的身体部位、按照脑瘫儿的日常生活能力来选用。此外,有部分辅助器具将伴随脑瘫儿一生,成为他们回归社会的无障碍通道。     

The use of pressure mapping for seating posture characterisation in children with cerebral palsy

Purpose.?To investigate the feasibility of using pressure mapping for the characterisation of the seated posture of children with cerebral palsy (CP).

Method.?Analysis of pressure mapping readings and video of children seated in a seating system during two assessments: The first assessment involved the pressure mapping of non-disabled children during a standardised protocol, and the second one involved the pressure mapping of children with CP performing daily life activities.

Results.?It was possible to detect periods of activity of the children from pressure readings using the mean variation of pressure. Additionally, several parameters stemming from pressure readings were shown to be successful in assessing the posture of the children. The centre of pressure when positioned relative to the ischial tuberosities, allowed for recognition of ‘adverse postures’ involving pelvic obliquity/medio-lateral trunk flexion or antero-posterior pelvic tilt/trunk flexion-extension, as deviations from the centre point. The angle between the principal axis of the sensors' pressure and the medio-lateral axis of the seat was also proposed to characterise pelvic transverse rotation but could not be tested with the actual protocol.

Conclusions.?Pressure monitoring can be used to assess qualitatively and quantitatively sitting posture of children with CP.