Experiences of Mistreatment Among Women with Cerebral Palsy

Abuse and mistreatment of women with disabilities is a complex problem that affects their health and well-being. Previous studies have focused on heterogeneous groups of women with disabilities, with only small numbers of women with cerebral palsy included, but different disabilities may play specific roles in relation to abuse. Exploring mistreatment of women with cerebral palsy is important in determining the relationship between mistreatment and a specific disability. The aim of this article was to describe experiences and meanings of mistreatment among women with cerebral palsy. The feminist biographical method was used to provide an in-depth exploration of women's storied lives, uncover the meaning of women's lives from their own perspective, and provide understanding of women whose stories are seldom told. A sample of eight participants participated in two in-depth, audio-recorded interviews. Two major themes and five subthemes emerged. The meaning of mistreatment included participants' definition of mistreatment and their explanation for mistreatment. Outcomes of mistreatment were divided into emotional, social, and physical outcomes. Health care providers need to understand the meaning and outcomes of mistreatment in their patients' lives to begin to address mistreatment, listen to patients, advocate when needed, and provide appropriate health care.     

刘氏小儿推拿法联合现代康复法在痉挛型小儿脑瘫治疗中的效果分析

目的 观察刘氏小儿推拿法联合Bobath现代康复法在痉挛型小儿脑瘫治疗中的疗效,为临床治疗痉挛型小儿脑瘫提供科学依据.方法 以杭州市萧山区特殊康复中心儿康部2015年5月至2016年5月期间收治的符合痉挛型小儿脑瘫诊断的63例患儿作为研究对象,按首诊顺序将其分为联合方案组(31例)和单一方案组(32例),单一方案组采用Bobath现代康复法治疗,联合方案组采用刘氏小儿推拿法联合Bobath现代康复法治疗,对比分析两组患儿四肢Ashworth评分、综合功能评分、GMFM评分以及临床疗效.结果 两组患儿治疗后的四肢Ashworth评分显著低于治疗前,而两组患儿治疗后的综合功能评分和GMFM评分均显著高于治疗前(f =2.65 ～8.14,均P＜0.05).联合方案组患儿的有效率显著高于单一方案组,两组间比较有显著差异性(x2 =4.01,P＜0.05).结论 刘氏小儿推拿法联合Bobath现代康复法在痉挛型小儿脑瘫治疗中疗效确切,可有效改善患儿四肢痉挛状况,为痉挛型小儿脑瘫的一种有效治疗方案.     

Professional background and the comprehension of family-centredness of rehabilitation for children with cerebral palsy

Background Children with cerebral palsy have difficulties in several areas of functioning, and they need long‐lasting rehabilitation with a clear focus on the individual's needs. Finnish guidelines emphasize family‐centred service. The values of family‐centred service are widely known, but how the principles of family‐centred service are adopted in clinical practice is not well documented. The objective of this study was to analyse the family‐centred behaviour of professionals working with children and adolescents with cerebral palsy. Methods A translated version of the Measure of Processes of Care for Service Providers (MPOC‐SP) questionnaire was used to evaluate the family‐centred service. The questionnaire was sent to all the professionals in the multidisciplinary rehabilitation teams at all the hospitals and governmental special schools treating children and adolescents with cerebral palsy in Finland (n= 327). Furthermore, 438 physiotherapy service providers working in the children's home region were invited to participate. Results A total of 201 multidisciplinary team members and 311 physiotherapy service providers completed the questionnaire. Both the team members and the service providers generally rated their family‐centred behaviour positively. There was statistically significant difference in how the team members in the multidisciplinary teams self‐assessed their family‐centred service. Physiotherapists working in multidisciplinary teams rated their family‐centred service higher than physiotherapy service providers. The professional's apprehension of family‐centred service increased with work experience. Conclusions Professional background and professional context seem to affect the apprehension of family‐centred service. Also work experience and being part of a multidisciplinary team have an influence on how the professionals embrace the family‐centred service delivered. The MPOC‐SP can be used to identify areas for improvement.     

Athetosis Increases Resting Metabolic Rate in Adults with Cerebral Palsy

Objectives To determine whether resting metabolic rate (RMR) is higher or lower in adults with cerebral palsy compared with the RMR of control subjects and to further examine physical characteristics of cerebral palsy that might affect RMR.Design Twenty-one adults with cerebral palsy (9 women, 12 men) were compared with 50 control subjects (25 men, 25 women) within the same age range (18 through 50 years). The following measurements were made: RMR by indirect calorimetry, anthropometries, body composition, and habitual physical activity patterns. The study was conducted at the University of Vermont General Clinical Research Center and the Ball State University Human Performance Laboratory.Statistical analyses Mean values±standard deviations, t tests, Pearson product-moment correlation coefficients, analysis of covariance, and stepwise multiple correlation regression analysis were used to examine the relationships among variables of interest.Results No significant differences were found in body weight, body mass index, fat mass, percentage body fat, and measured RMR between the two groups. The subjects with cerebral palsy were significantly shorter, had less fat-free mass, and expended fewer kilocalories in leisure time activities than the control subjects. After statistical adjustment for differences in fat-free mass, the subjects with cerebral palsy had a 14% (P<.001) higher adjusted RMR (1,742 kcal/day) compared with that of the control subjects (1,534 kcal/day). According to stepwise regression analysis, RMR was best predicted in the entire sample by fat-free mass and the presence or absence of athetosis (multiple R=.83, P<.001). The presence of cerebral palsy alone was not significantly correlated with RMR.Conclusions The increased energy requirements of adults with cerebral palsy can be partially explained by athetotic movements. In this sample, the presence of athetosis increased RMR by an average of 524 kcal/day. JAm Diet Assoc. 1995; 95:145-148.     

脑瘫儿童在CRT测验中反映的智力特征

目的分析脑瘫儿童在瑞文测试联合型测验(简称CRT)中所反映的智力特征。方法对78例脑瘫儿童和年龄性别与脑瘫儿童相匹配的无神经系统疾病的78例正常学龄儿童均采用CRT量表进行智力测试。结果 78例脑瘫儿童中有63例伴有智力发育迟缓。脑瘫儿童与正常儿童瑞文各单元及总分得分均有显著性差异(p<0.001)。不同类型的脑瘫儿童瑞文得分存在显著性差异(p<0.001)。结论脑瘫儿童的智力比正常儿童差;手足徐动型的脑瘫儿童一般智力因素好于痉挛型和共济失调型的脑瘫儿童。     

A comparison of doctors', parents' and children's reports of health states and health-related quality of life in children with chronic conditions

Background Health‐related quality of life is an important outcome. Self‐report is the gold standard, but in the paediatric setting we often rely on proxy reporting. Our understanding of the differences between self‐ and proxy reports and the factors that influence them is limited. These differences can impact on treatment choices and the patient–doctor relationship. Objective To evaluate differences between children's, parents' and doctors' perceptions of health states and health‐related quality of life in children with chronic illness and explore factors which explain these differences. Methods Consecutive families attending eligible clinics at a tertiary paediatric centre were invited to complete the Health Utilities Index (HUI) 23 questionnaire. Percentage agreement and kappas were calculated as a measure of the agreement between pairs. Chi‐squared tests or Fisher's exact test, if appropriate, were performed to determine if there was an association between level of agreement and participant variables. Results Data were collected for 130 parent–doctor pairs, 59 child–parent pairs and 59 child–doctor pairs. Overall health‐related quality of life scores did not differ between responders, but there was poorer agreement for subjective domains. Doctor–child agreement was lower than parent–child agreement. Children with a diagnosis of cerebral palsy or chronic neurological condition were more likely to have lower inter‐rater agreement for both subjective and objective domains. On the HUI2, agreement was lower for parent–child pairs when the father was the respondent. For child–doctor pairs, an increased frequency of patient–doctor visits and doctors' seniority were predictors of poorer agreement on the HUI3 and HUI2 respectively. Conclusions We identified factors associated with level of agreement for self‐ and proxy reporting on the HUI23. Parent–child agreement was higher than doctor–child agreement. Patients with significant pain or emotional distress and patients with a diagnosis of severe cerebral palsy or chronic neurological conditions were more susceptible to under‐reporting of subjective aspects of well‐being by doctors and parents and may benefit from formal assessment of health‐related quality of life in the clinical setting.     

Impact of cerebral visual impairment on the everyday life of cerebral palsied children

Summary A group of 43 patients suffering from cerebral palsy and cerebral visual impairment was compared with a group of 24 cerebral palsy patients with normal visual acuity, with regard to a functional level in daily life. Four categories were considered: communication, emotional contact, self-care and intelligence. Cerebral visual impairment-cerebral palsy patients scored significantly lower in all categories than cerebral palsy patients with normal visual acuity. In the cerebral visual impairment-cerebral palsy group, there was a higher frequency of tetraplegia compared with the group with normal acuity, but even after this predominance had been excluded, a significant difference remained. When dealing with cerebral palsy patients, occurrence of cerebral visual impairment must be taken into account. By initiating intervention programmes, one can prevent extra handicaps due to the consequences of diminished visual acuity.     

软组织松解术治疗脑瘫痉挛性四肢畸形

目的评价软组织松解术治疗脑瘫痉挛性四肢畸形的疗效。方法采用软组织松解术治疗脑瘫痉挛性四肢畸形60例,松解术后均采用石膏固定6周,6周后改为夜间支具固定,白天去除固定进行康复功能锻炼,一直坚持3~5年,年龄较小者则坚持到12岁以上。结果随诊平均3.8年(0.5~7.0年),优39例,良16例,差2例,优良率为91.67%。结论软组织松解术是一种治疗脑瘫痉挛性四肢畸形的有效方法之一。     

脑干听觉诱发电位在脑瘫患儿听力障碍诊断中的应用

目的：探讨脑干诱发电位（BAEP）在脑瘫患儿听力障碍诊断中的临床应用。方法：收集39例脑瘫患儿,应用amplaid MK 12型脑干诱发电位仪测试,在双耳垂或耳后茎突为信号电极,颅顶区为参考电极,前额或手腕为地电极。用1000Hz短声单耳膨胀刺激的BAEP资料进行分析。结果：39例脑瘫患儿,BAEP异常为32例,正常7例,阳性率82%,其中周围性听路损害13例,中枢性听路损害16例,混合性损害3例。结论：BAEP检查对早期发现小儿脑瘫听路损害有重要临床价值,是早期筛查新生儿、婴幼儿听力障碍及判断脑干中枢性听功能异常的优良技术。     

维生素B_6对脑瘫幼鼠认知障碍和步态异常的改善作用

目的:长期维生素B6(VB6)消化道给予脑瘫模型幼鼠,探讨其对认知功能障碍和步态异常的作用及可能机制。方法:14d龄Wistar大鼠54只随机分为脑瘫组(CM,n=18),VB6处理组(CM+VB6,n=18)和假手术组(CS,n=18)。采用改良的Philip方法,建立缺血缺氧脑瘫模型(右侧肢体偏瘫);应用Morris水迷宫试验(MWMT)检测各组大鼠认知功能的变化,观测其寻找水下平台的逃避潜伏期(EL)和游泳距离(SD);应用Footprintpatterntest(FPT)检测各组大鼠步态的变化,观测其左/右侧步长(LSL,RSL)、前肢间距离(FBW)、后肢间距离(HBW)和左/右侧前、后爪心间距离(DLFHFO,DRFHFO)。结果:MWMT:从D12起CM+VB6组EL、SD较CM组缩短(P<0.05)。从D19起CM+VB6组EL与CS组无差异(P>0.05),D20CM+VB6组SD与CS组无差异(P>0.05)。FPT:CM+VB6组与CM组比较,从D5起LSL、RSL增大(P<0.05),从D7起HBW、DRFHFO减小(P<0.05)。CM+VB6组和CS组比较,从D1起RSL、HBWD、RFHFO增大(P<0.05),从D5起LSL减小(P<0.05),D9FBW减小(P<0.05)。结论:VB6对脑瘫幼鼠认知功能障碍、步态异常有改善作用,改善效果随补充时间延长而增强。     

Short‐term changes in parents' resolution regarding their young child's diagnosis of cerebral palsy

Objective This study aimed to describe changes in parents' resolution regarding their young child's diagnosis of cerebral palsy over a period of 1 year, and to describe the changes in strategies of resolution. Methods In this longitudinal study, 38 parents of children with cerebral palsy (mean age 18.4 months, SD = 1.1 at baseline) were followed with the Reaction to Diagnosis Interview, assessing their personal reactions to their child's diagnosis (i.e. resolution status). Changes at main and subclassification level of the Reaction to Diagnosis Interview were investigated using a binominal test. Results Twenty‐nine parents (76%) were found to be stable with respect to their main resolution status (i.e. ‘resolved’ or ‘unresolved’), while 24% of the parents either had changed from ‘unresolved’ to ‘resolved’ or in the opposite way. Furthermore, of the 28 parents who were classified as ‘resolved’ at both times, 15 (54%) had changed at subclassification level with respect to the specific strategies used. Conclusion Resolution at a main level of parental reactions to their child's diagnosis was predominantly stable. Most parents were classified as ‘resolved’ at both baseline and follow‐up assessment. However, more detailed analyses at subclassification level showed that most parents with a ‘resolved’ main status showed changing patterns of resolution strategies to their child's diagnosis, suggesting that resolution is an ongoing process.     

Delivering healthcare services to children with cerebral palsy and their families: a narrative review

Children with cerebral palsy have complex healthcare needs and often require complex multidisciplinary care. It is important for clinicians to understand which approaches to healthcare service delivery for this population are supported in the literature and how these should be applied in clinical practice. This narrative review aims to identify and review the evidence for current approaches to healthcare service delivery for children with cerebral palsy. Databases were searched using key terms to identify relevant research articles and grey literature from December 2011 to September 2013. Search results were screened and sorted according to inclusion and exclusion criteria. Thirty‐two documents were included for evaluation and their content was analysed thematically. Three current approaches to healthcare service delivery for children with cerebral palsy identified in this narrative review were family‐centred care, the World Health Organisation's International Classification of Functioning, Disability and Health, and collaborative community‐based primary care. However, healthcare services for children with cerebral palsy and their families are inconsistently delivered according to these approaches and the identified guidelines or standards of care for children with cerebral palsy have limited incorporation of these approaches. Future research is required to investigate how these approaches to healthcare service delivery can be integrated into clinical practices to enable clinicians to improve services for this population.     

生物力学矫形鞋垫对脑瘫伴足外翻儿童下肢功能的疗效

目的 探讨生物力学矫形鞋垫对脑瘫伴足外翻儿童下肢功能的疗效。 方法 选取2017年3月-9月在佳木斯大学附属第三医院收治的痉挛型双瘫伴足外翻儿童30例,随机分为对照组(n=15)和观察组(n=15)。对照组只接受常规康复训练,观察组在此基础上结合生物力学矫形鞋垫进行训练,两组均治疗3个月。治疗前后对两组儿童分别应用立姿跟骨休息位(RCSP)、粗大运动功能评定量表(GMFM)88项、Berg平衡量表(BBS)和足印分析法进行评定。 结果 两组治疗后RCSP、GMFM-88项D区和E区评分、BBS评分、步长及步速均优于治疗前(P<0.05),且观察组优于对照组(P<0.05)。 结论 生物力学矫形鞋垫可改善痉挛型双瘫儿童的足外翻畸形,提高粗大运动功能,改善步态及平衡功能。     

Case Report: Magnetically-Retained Overdenture for a Patient with Cerebral Palsy

The retention of lower dentures in patients with cerebral palsy is often poor due to their constant dislodgement by involuntary movements of the tongue and lips. This report describes the fabrication of a magnetically retained overdenture for a cerebral palsied patient and evaluates the success of this prosthesis during a four year period. The magnetic retention system appears to offer greatly improved retention and stability as compared with traditional dentures. However, the success of this system depends to a large extent on the maintenance of optimal oral hygiene to prevent caries and periodontal disease. For patients with cerebral palsy who require the provision of lower dentures, the magnetic retention system may provide improved communication, mastication and use of oral prostheses such as mouth-held typing sticks.     

针灸结合桂枝汤治疗脑瘫患儿汗证30例疗效观察

目的 观察针灸配合桂枝汤加味治疗脑瘫患儿汗证的临床疗效.方法 选择2014年1月至2016年5月陕西中医药大学附属西安中医脑病医院住院的脑瘫患儿伴有汗证者60例为研究对象,以随机数字法分为治疗组和对照组,每组30例.治疗组患者应用针灸配合桂枝汤治疗,对照组患者应用虚汗停颗粒治疗,两组患者均治疗10天,治疗前后均参照有关文献进行评定观察,比较两组治疗效果.结果 治疗组出汗评分值为2.0±4.6,显著低于对照组的4.3±2.7,差异有统计学意义(t=2.362,P<0.05).治疗组的有效率为93.3%(28/30),显著高于对照组的70.0%(21/30),χ2=2.362,P<0.05.结论 桂枝汤加味配合针灸治疗脑瘫患儿汗证疗效明显,值得临床推广应用.     

节律性听觉刺激改善痉挛型脑瘫患儿步态的研究进展

节律性听觉刺激(RAS)通过一定的外部节律刺激(如音乐、节奏)激活听觉中枢和大脑运动区,控制下肢肌肉配合节奏训练、调整步态模式,从而达到改善步态的效果。RAS是一种改善痉挛型脑瘫患儿步态的新兴康复治疗方法,其机制假说包括夹带机制、运动听觉机制和动机。RAS能够有效提高患儿的步态参数(步速和步长)、增加患儿下肢关节活动度,且不同频率和训练时间均会对其干预效果产生影响。     

Special considerations in counseling clients with cerebral palsy

Written from a professional and personal perspective, this article describes some of the key social and sexual issues facing people with cerebral palsy. Clients with cerebral palsy, disabled from birth and thus likely to have been socialized into a disabled, asexual role, often struggle with putting their disability into its proper perspective, demystifying sexuality, developing a positive body image, mastering essential social skills, and understanding their own sexual functioning. To be helpful, psychotherapists and counselors must sensitively address these issues while dealing with their own stereotypes and attitudes. Although the discussion focuses on cerebral palsy, there is considerable overlap and applicability to clients with other types of disabilities as well.Reprinted fromSexuality and Disability, Volume 5, Number 2, Summer 1982.     

高通量测序探讨脑瘫儿童肠道菌群的变化

目的 利用高通量测序方法,探讨脑瘫儿童肠道菌群的变化。方法 选择龙岗区社会福利中心诊断为脑瘫且正常进食的34例患儿作为脑瘫组;同时选取脑瘫伴癫痫且正常进食的20例患儿作为脑瘫伴癫痫组;另外选取同龄健康儿童22例作为健康组。留取所有受试者的粪便标本,提取总DNA并扩增,采用对16SrRNA基因进行高通量测序,对测序结果进行生物学分析。结果 1)健康组与脑瘫组、脑瘫伴癫痫组儿童相比肠道菌群结构差异有统计学意义(R²=0.410、P=0.001;R²=0.450、P=0.001),但脑瘫组与脑瘫伴癫痫组儿童相比肠道菌群结构较为相似,差异无统计学意义(R²=0.025、P=0.272)。2)脑瘫组和脑瘫伴癫痫组儿童肠道菌群中Prevotella丰度均明显增加(脑瘫组均值为32.68%,脑瘫伴癫痫组均值为34.34%)。结论 正常进食的脑瘫组、脑瘫伴癫痫组儿童中Prevotella丰度明显增加,Prevotella也许是脑瘫儿童的“保护菌属”。     

高通量测序探讨脑瘫儿童肠道菌群的变化

目的 利用高通量测序方法,探讨脑瘫儿童肠道菌群的变化。方法 选择龙岗区社会福利中心诊断为脑瘫且正常进食的34例患儿作为脑瘫组;同时选取脑瘫伴癫痫且正常进食的20例患儿作为脑瘫伴癫痫组;另外选取同龄健康儿童22例作为健康组。留取所有受试者的粪便标本,提取总DNA并扩增,采用对16SrRNA基因进行高通量测序,对测序结果进行生物学分析。结果 1)健康组与脑瘫组、脑瘫伴癫痫组儿童相比肠道菌群结构差异有统计学意义(R²=0.410、P=0.001;R²=0.450、P=0.001),但脑瘫组与脑瘫伴癫痫组儿童相比肠道菌群结构较为相似,差异无统计学意义(R²=0.025、P=0.272)。2)脑瘫组和脑瘫伴癫痫组儿童肠道菌群中Prevotella丰度均明显增加(脑瘫组均值为32.68%,脑瘫伴癫痫组均值为34.34%)。结论 正常进食的脑瘫组、脑瘫伴癫痫组儿童中Prevotella丰度明显增加,Prevotella也许是脑瘫儿童的“保护菌属”。     

Special considerations in counseling clients with cerebral palsy

Written from a professional and personal perspective, this article describes some of the key social and sexual issues facing people with cerebral palsy. Clients with cerebral palsy, disabled from birth and thus likely to have been socialized into a disabled, asexual role, often struggle with putting their disability into its proper perspective, demystifying sexuality, developing a positive body image, mastering essential social skills, and understanding their own sexual functioning. To be helpful, psychotherapists and counselors must sensitively address these issues while dealing with their own stereotypes and attitudes. Although the discussion focuses on cerebral palsy, there is considerable overlap and applicability to clients with other types of disabilities as well.ACSWThe term cerebral palsy, as used in this article, refers to amotor disability caused by brain damage, usually occurring at birth or in early childhood.