An evaluation of quality of life of mothers of children with cerebral palsy

PURPOSE: To evaluate the quality of life of mothers with children suffering from cerebral palsy compared with those who have children with minor health problems. METHOD: Forty mothers with a child suffering from cerebral palsy and 44 mothers with a child suffering from minor health problems participated in a comparative study. The Turkish version of the Medical Outcomes 36-Item Short Form Health Survey (SF-36) was used to assess a mother's quality of life. The severity of a child's motor disability was assessed using the Gross Motor Function Classification System (GMFCS). RESULTS: With the exception of the SF-36 physical functioning subscale, the mean scores on the SF-36 subscales were significantly lower in mothers of children with CP than those of the comparison group. The quality of life scores of mothers were significantly correlated with the severity of a child's motor disability (except physical functioning subscale). Significant correlations were found between GMFCS and the role physical; vitality; role emotional; and mental health subscales of the SF-36. CONCLUSIONS: The quality of life profile of mothers of children with cerebral palsy is different from those who have a child with minor health problems. Different coping strategies and psychosocial programmes must be designed and implemented to decrease the burden of care.     

脑瘫儿童母亲生活质量及其影响因素分析

目的 探讨脑瘫儿童母亲生活质量及其影响因素.方法 对123例脑瘫患儿及其母亲发放患儿基本情况调查表和美国简明健康测量量表SF-36,采用自填与访谈相结合的方式进行调查并统计,然后采用t检验、相关分析及单因素方差分析,对其影响因素进行分析;采用多元回归分析方法筛选和分析其生活质量的主要影响因素.结果 脑瘫儿童母亲的总体生活质量普遍下降,其中情感职能、活力、总体健康得分最低,分别为55.28、60.49和65.26分.脑瘫儿童母亲生活质量各个维度的相关性分析显示,患儿年龄与总体健康、生理功能、情感职能三个维度呈正相关(相关系数分别为0.213、0.191、0.298,P＜0.05);患儿病情与除身体疼痛外的其它七个维度呈负相关;母亲年龄仅与社会功能呈正相关(相关系数为0.196,P＜0.05);母亲文化程度与总体健康、情感职能、社会功能、精神健康呈负相关(相关系数分别为-0.274、-0.312、-0.427和-0.180,P＜0.05).单因素分析显示,患儿年龄、患儿病情、父亲职业、母亲职业、母亲文化程度五个因素对母亲生活质量的影响具有统计学意义(P＜0.05).以生活质量总积分为因变量,多元线性逐步回归分析(Pin=0.05,Pout=0.10)显示,患儿病情、父亲职业两个因素进入多元线性回归方程,差异有统计学意义(P＜0.05).结论 患儿年龄、患儿病情、母亲文化程度、母亲职业、父亲职业五项因素是影响脑瘫儿童母亲生活质量的主要因素;针对脑瘫儿童母亲的心理特征,采取综合性全方位的干预措施,可提高患儿康复效果和改善母亲生活质量.     

脑性瘫痪对患儿生存质量的影响研究

目的探讨脑性瘫痪对患儿生存质量的影响。方法采用儿童生存质量测定量表体系（the pediatric quality of life inventory measurement models,PedsQL）4.0作为儿童生存质量的测定工具,分别对脑性瘫痪患儿、一般疾病患儿及正常儿童进行生存质量测定,比较各组之间的差异性。结果脑性瘫痪患儿113例,男68例,女45例,平均年龄为（3.65±2.15）岁;一般疾病患儿52例,男30例,女22例,平均年龄为（3.77±1.83）岁;正常儿童314例,男177例,女137例,平均年龄为（4.46±1.13）岁。脑性瘫痪组患儿的生理功能得分为（27.80±22.61）分,情感功能得分为（55.88±22.02）分,社交功能得分为（37.17±23.44）分,PedsQL总分为（39.05±17.20）分;一般疾病组患儿的生理功能得分为（89.12±11.99）分,情感功能得分为（76.44±15.81）分,社交功能得分为（88.46±13.98）分,PedsQL总分为（83.12±10.54）分;正常对照组儿童的生理功能得分为（91.42±36.58）分,情感功能得分为（83.28±80.61）分,社交功能得分为（84.91±16.25）分,PedsQL总分为（86.57±24.83）分。脑性瘫痪组患儿在生理功能得分、社交功能得分及PedsQL总分方面均较一般疾病组和正常对照组儿童低,差异有统计学意义（P〈0.01）;脑性瘫痪组患儿的情感功能得分较正常儿童低,差异有统计学意义（P〈0.05）。脑性瘫痪组患儿的学校表现得分[（55.00±18.95）分]低于一般疾病组[（68.39±13.65）分]和正常对照组[（83.66±11.29）分]儿童,差异有显著统计学意义（P〈0.01）。结论脑性瘫痪患儿的生理功能、社交功能及总体生存质量明显低于一般疾病患儿及正常儿童,其情感功能低于正常儿童,但是与一般疾病患儿无明显差异,提示脑性瘫痪患儿生存质量存在明显的损害,而对情感功能的损害相对较小;脑性瘫痪患儿的学校表现较一般疾病组和正常对照组儿童差,提示疾病对脑性瘫痪患儿的学校表现有严重影响。因此,对脑性瘫痪患儿的康复应是对其生存质量的全面提高。     

Measuring quality of life in cerebral palsy children..

Objectives

To identify and describe available health-related quality of life (HRQL) markers in walking paediatric cerebral palsy (CP) patients.

Methods

A Medline literature review (1980-2007); content, application field, and metrologic properties of the scales were specified.

Results

Seventeen scales were identified and classified into three categories: scales developed for cerebral palsy patients or developed for neuromotor pathologies and used mostly in cerebral palsy patients; generic scales developed for the general population; generic scales developed for chronic, non-specific diseases.

Discussion and Conclusion

Documentation of metrologic properties in available HRQL scales is unequal. Information about “sensitivity to change” of the scales is necessary for their use in therapeutic outcome or cohort follow-up studies in CP patients. To include an analysis of the patient's opinion is important, thus most of the questionnaires are based on the experimenter's experience and synthesis of the literature. CP children's auto-evaluation of their quality of life using a questionnaire developed based on the patients’ and families’ opinions, in association with a participation questionnaire, seems to be the most informative method to include in outcome studies.     

Fatigue in the mothers of children with cerebral palsy

Purpose: To evaluate fatigue in the mothers of children with cerebral palsy (CP), and to determine its associations with clinical parameters of CP, depression and quality of life (QoL). Method: Ninety children (50 girls and 40 boys) with spastic CP and their mothers were included. Control group comprised mothers of healthy children. Gross motor function classification system (GMFCS) was used for determining functional status. Spasticity was evaluated by using modified Ashworth scale. Fatigue symptom inventory (FSI) was used for assessing maternal fatigue, Nottingham health profile (NHP) for maternal QoL, and Beck Depression Scale (BDS) for maternal depression. Results: Mothers of children with CP scored significantly higher in all FSI subgroups (intensity of fatigue, duration of fatigue and interference with QoL), all NHP subgroups and BDS (p?p?< 0.01). No association was found between FSI and clinical parameters of children with CP including age, gender, type of CP, tonus and functional impairment (p?>?0.05). Conclusions: Our findings indicate that fatigue levels of mothers with CP children are higher than those with healthy children and associated with depression and deterioration in QoL in terms of physical, social and emotional functioning. This should be considered while designing a family centred rehabilitation programme for children with CP.

• Implications for Rehabilitation

• Caring for a child with cerebral palsy has psychological, social and financial impacts on familiesand is associated with increased levels of fatigue among mothers.

• The capacity of current programs and services needs to be strengthened to accommodate theneeds of children with CP and their mothers in order to reduce fatigue of mothers.

• New programs need to be developed to provide psychosocial support for the mothers andto reduce their fatigue as they continue to care for their children.

• Provision of assistive technology devices (particularly suitable wheelchairs) will be useful inreduction of fatigue levels of mothers.

     

The course of health-related quality of life of preschool children with cerebral palsy

Purpose: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. Methods: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. Results: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. Conclusions: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.

Implications for Rehabilitation

• Although preschool children with cerebral palsy (CP) generally have a fairly good health-related quality of life, large individual differences in the course of health-related quality of life exist.

• The type of CP or the level of motor disabilities is not related to the course of health-related quality of life.

• Because of its subjective nature, for young children with CP health-related quality of life is to be determined by asking their parents, not by doctor’s estimation depending on disease-specific factors.

     

脑性瘫痪患儿家庭生活质量研究

目的:脑性瘫痪(简称脑瘫)患儿的治疗、教育、智力开发及本身生活质量与其监护人的生活质量关系密切。调查脑瘫患儿家长的生活质量,以便实施正确引导,使之能配合脑瘫患儿的全面干预治疗。方法:用“医院焦虑抑郁量表”对50例脑瘫患儿监护人与50例急性病患儿监护人进行配对衡量对照,并就患儿现状、家庭情况、对孩子患病态度、患病对家庭生活影响以及由此带来的家长对治疗的态度等方面进行流行病学调查研究。结果:脑瘫患儿监护人焦虑抑郁量表总评分(AD):19.1±2.3,其中焦虑评分(A):10.1±2.2,抑郁评分(D):8.9±0.7。对照组监护人焦虑抑郁量表总评分(AD):5.7±1.4,焦虑评分(A):3.4±1.3,抑郁评分(D):2.4±1.0,两组间各项评分差异均有显著性意义(t=35.092,18.529,39.056,P均<0.001)。结论:脑瘫患儿家长普遍存在焦虑抑郁情绪、生活质量下降,应给与适当心理指导。     

脑性瘫痪儿童运动功能与生存质量之间的相关性分析

目的:分析4—12岁脑瘫儿童运动功能与生存质量之间的相关性。方法:以2014年4—6月期间在复旦大学附属儿科医院康复中心、上海市徐汇区华泾社区卫生服务中心儿童康复科、上海市闵行区江川社区卫生服务中心儿童康复科、上海市宝山区金惠康复医院和上海市浦东特殊教育学校接受康复干预的4—12岁的脑瘫儿童和家庭为研究对象,共90例脑瘫儿童和家长纳入研究,其中脑瘫儿童包括男性54例,女性36例,平均年龄(7.40±2.44)岁;4—7岁59例,8—12岁31例,采用中文版脑瘫儿童生存质量问卷(cerebral palsy quality of life,CPQOL)评价生存质量,采用中文版脑瘫粗大运动功能分级系统(gross motor function classification system,GMFCS)进行粗大运动功能分级。采用中文版脑瘫患儿手功能的分级系统(manual ability classification system,MACS)进行手功能分级,通过分析GMFCS、MACS与CPQOL各项分值之间的相关性明确脑瘫儿童运动功能与生存质量之间的关系。结果:GMFCS分级与7个CPQOL分区中的5个分区有着较弱的相关性,其中与社会福祉和受容度、功能、参与能力与躯体健康、情绪健康与自尊4个分区为负相关(r=-0.29—-0.38,P0.05),表明GMFCS分级越高上述4个分区的分值就越低,也就是相关的生存质量就越低,此外GMFCS分级还与疼痛和残障的影响分区呈现较弱的正相关(r=0.28,P0.05),表明GMFCS分级越高,脑瘫儿童受到疼痛和残障的影响就越明显。与GMFCS相比,MACS只有与CPQOL的社会福祉和受容度、功能两个分区呈现更弱的相关性(r=-0.27,P0.01;r=-0.23,P0.05)。与较小年龄脑瘫儿童(4—7岁)相比年龄较大脑瘫儿童(8—12岁)的GMFCS分级与CPQOL各分区的相关性更为明显。结论:粗大运动功能在一定程度上影响着脑瘫儿童的生存质量,与粗大运动功能相比手功能对生存质量的影响较小,较大年龄组脑瘫儿童的粗大运动功能与生存质量之间的关系更为密切。     

Relationships among parenting stress,health-promoting behaviors,and health-related quality of life in Korean mothers of children with cerebral palsy

Health-promoting behaviors have been shown to enhance the quality of life across diverse populations. In this study, we examined the indirect effects of several health-promoting behaviors on the relationship between parenting stress and health-related quality of life in mothers of children with cerebral palsy (CP). A convenience sample of Korean mothers (N = 180) of children aged 10 months to 12 years with CP was recruited from clinical and school settings. Health-promoting behaviors were measured using the health-promoting lifestyle profile II, which is comprised of six subscales: health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, and stress management. Multiple mediation analyses were conducted to examine the mediating role of these behavioral categories. Spiritual growth (β = .56, p < .05) had an indirect effect on the relationship between parenting stress and physical health-related quality of life while spiritual growth (β = −1.00, p < .01) and stress management (β = −.80, p < .05) were found to mediate the association between parenting stress and mental health-related quality of life. The findings of multiple mediation analyses provide evidence of the influence of specific health-promoting behaviors on health-related quality of life, thereby informing the development of intervention programs for mothers of children with disabilities.     

Quality of life of Finnish children with cerebral palsy

Purpose: The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the children’s and caregivers’ perspectives. The acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated. Method: This study was conducted in 2010–2013 as a part of the national CP-project. It is based on validated CP QOL-Child questionnaires. Children between 9 and 12 years were asked to fill in the child-self-report version. Caregivers who had a 4- to 12-year-old child with CP filled in parent-proxy reports. Results: Responses were obtained from 63 children and 161 caregivers. The response rates were 63 and 60%, respectively. Overall QOL was reported to be fairly good with no significant regional differences within Finland. Children reported significantly higher QOL in all QOL-domains except “social wellbeing and acceptance” than their caregivers did. The results showed acceptable levels of internal consistency of the Finnish version of the CP QOL-Child. Conclusions: QOL of children with CP is quite good in Finland. However, barriers to participation and the impact of disability and pain impair QOL. The Finnish version of the CP QOL-Child questionnaire is an appropriate clinical tool to assess QOL.

• Implications for Rehabilitation

• The used questionnaire provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans.

• The study brings forward the voices of children.

• It was found that pain has a great role in QOL, which should be taken into account when making rehabilitation plans.

• The participation of children with CP should be strengthened in every possible ways.

     

Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective

Purpose.?Disability in a child affects not only the child's life but also the family's life. The aim of our study is to verify the quality of life (QOL) of mothers of disabled children with cerebral palsy (CP) with epilepsy compared with non-epilepsy children evaluated in a Brazilian center.

Methods.?Thirty mothers of disabled children participated in the study. The control group comprised of 18 healthy mothers of children without disabilities. All mothers agreed to participate in the study. They completed the evaluation forms of the SF-36 health survey, a well-documented, self-administered QOL scoring system.

Results.?The results of our study support the premise that mothers of children with CP, as a group, have poorer QOL than mothers of not disabled children.

Conclusions.?We also observed that mothers of children with CP and epilepsy have poorer QOL than mothers of children with CP without epilepsy.     

Health-related quality of life in childhood cerebral palsy

OBJECTIVE: To describe the health-related quality of life (HRQOL) of a cross-section of children with cerebral palsy (CP) using the Child Health Questionnaire. DESIGN: Survey of the parents or guardians of children with CP. SETTING: Outpatient clinics at a tertiary care children's hospital. PARTICIPANTS: Children (N=177; 98 boys, 79 girls; mean age +/- standard deviation [SD], 8.6+/-4.2y) with CP were enrolled as a convenience sample. Study subjects were stratified by severity of CP using the Gross Motor Function Classification System. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: HRQOL scores, as determined by the Child Health Questionnaire-Parent Form 50. RESULTS: Parents reported reduced HRQOL for their children with CP. In the physical function domain, most children scored over 3 SDs below a normative sample, and scores in parental impact domains were at least 1 SD below the normative sample. Psychosocial domains were less impaired. Most of the effects on physical and parent impact domains were greater in children with more severe CP, although they were significant in most strata of severity. CONCLUSIONS: Children with CP have reduced HRQOL and the degree to which it is reduced is related to the severity of their CP.     

健康教育对脑性瘫痪患儿家长生活质量影响的研究

[目的]提高脑性瘫痪患儿家长生活质量。[方法]对首次就诊的30例脑性瘫痪患儿家长,在确诊后1周内发放生活质量综合评定问卷,根据调查结果,针对性地实施健康教育,1个月后再次发放问卷调查,比较实施健康教育前后患儿家长的生活质量。[结果]实施健康教育前后物质生活维度评分比较,差异无统计学意义(P=0.99),躯体功能、心理功能、社会功能等维度及生活质量总体评分比较,差异有统计学意义(P均<0.001)。[结论]对脑性瘫痪患儿家长实施有针对的健康教育,能提高家长对疾病的认知水平、社会支持利用度及社会支持水平,从而提高他们的生活质量。     

家庭中心式护理对脑瘫患儿家长生存质量的影响

目的：了解家庭中心式护理对脑瘫患儿家长生存质量的影响。方法选择脑瘫患儿家长104名,将2011年2-5月抽取的52名脑瘫患儿家长作为干预组,2010年10月-2011年1月抽取的52例脑瘫患儿家长作为对照组。对干预组家庭实施家庭中心式护理模式,对照组采用普通护理模式。干预前后用世界卫生组织生存质量测定量表简表（ WHOQOL-BREF ）和纽卡斯尔护理服务满意度量表（ NSNS）进行评估。结果干预前两组患者的 WHOQOL-BREF 各领域得分差异无统计学意义（ P ＞0．05）。干预后,干预组WHOQOL-BREF各领域得分为生理领域（62．64＆#177;13．63）分,心理领域（59．46＆#177;14．15）分,社会关系领域（63．41＆#177;13．40）分,环境领域（48．52＆#177;15．20）分,NSNS得分（57．15＆#177;6．38）分,均要高于对照组的（54．40＆#177;13．22）,（47．12＆#177;16．16）,（53．98＆#177;13．52）,（42．43＆#177;13．35）,（51．42＆#177;7．90）分,差异有统计学意义（Z分别为-3．139,-4．136,-3．792,-2．232,-4．725;P＜0．05）;干预组自身对照,干预后WHOQOL-BREF各领域得分均高于干预前,差异有统计学意义（ Z分别为-4．213,-4．068,-3．299,-4．160;P＜0．05）。结论家庭中心式护理模式可以提高脑瘫患儿住院康复治疗期间患儿家长的生存质量,并提高他们对护理服务的满意度。     

健康教育对脑性瘫痪患儿家长生活质量影响的研究

[目的]提高脑性瘫痪患儿家长生活质量。[方法]对首次就诊的30例脑性瘫痪患儿家长,在确诊后1周内发放生活质量综合评定问卷,根据调查结果,针对性地实施健康教育,1个月后再次发放问卷调查,比较实施健康教育前后患儿家长的生活质量。[结果]实施健康教育前后物质生活维度评分比较,差异无统计学意义（P=0.99）,躯体功能、心理功能、社会功能等维度及生活质量总体评分比较,差异有统计学意义（P均〈0.001）。[结论]对脑性瘫痪患儿家长实施有针对的健康教育,能提高家长对疾病的认知水平、社会支持利用度及社会支持水平,从而提高他们的生活质量。     

以家庭为中心的康复护理管理对脑瘫患儿生活质量的影响研究

目的探讨以家庭为中心的康复护理管理对脑瘫患儿生活质量的影响。方法选取本院2014年3月~2016年2月住院的112例脑瘫患儿作为研究对象,根据干预方法不同分为对照组和观察组各56例,对照组采用常规护理,观察组在对照组的基础上进行个性化康复护理,随访3个月,采用Zarit照顾者负担量表(Zarit Burden Interview,ZBI)对患儿照顾者的负担量进行评估;采用生活质量核心量表(QOL-30)对患儿生活质量进行评估,并对患儿的满意度进行评价。观察两组患儿的ZBI评分、生活质量评分及满意度。结果两组患儿护理后ZBI评分明显低于护理前,差异具有统计学意义(P0.05);护理后观察组的ZBI评分明显低于对照组,差异具有统计学意义(P0.05);观察组的生活质量评分明显优于对照组,差异具有统计学意义(P0.05);观察组的满意度为98.2%明显高于对照组的80.4%,差异具有统计学意义(P0.05)。结论对脑瘫患儿实施以家庭为中心的康复护理管理可以有效地改善患儿的负担量,提高患儿的生活质量,满意度较高。