脑性瘫痪患儿及其家属生存质量研究

目的:探讨脑性瘫痪对患儿及其家属生存质量的影响。方法:采用儿童生存质量测定量表体系(the pediatricquality of life inventory measurement models,PedsQL)4.0作为测定工具,分别对脑性瘫痪儿童及正常儿童进行生存质量测定;采用SF-36健康调查量表(the Mos 36-item short form health survey)作为测定工具,分别对脑性瘫痪儿童家属及正常儿童家属进行生存质量测定,比较脑性瘫痪儿童和正常儿童、脑性瘫痪儿童家属和正常儿童家属之间生存质量的差异性。结果:脑瘫儿童PedsQL 4.0测定中,脑瘫儿童在生理功能、情感功能、社交功能、学校总分及总分方面得分,均低于正常儿童(P<0.01)。在SF-36调查中,脑瘫儿童家属除外生理功能及生理职能两个项目外,其他项目包括躯体疼痛、总体健康、活力、社会功能、精神职能、精神健康以及总分方面得分,均低于正常儿童家属组(P<0.05)。结论:脑性瘫痪儿童及其家属的生存质量均较正常对照组低,因此,在实际的康复治疗中,应采用综合康复治疗手段,提高脑瘫儿童及其家属生存质量,同时社会要高度关注脑瘫患儿的家庭。     

Health professionals' perceptions of feeding-related quality of life in children with quadriplegic cerebral palsy

BACKGROUND: Our aim was to identify the major determinants of feeding-related quality of life (QoL) in children with quadriplegic cerebral palsy (QCP) from the perspective of health professionals to provide a framework for comprehensive clinical evaluation of health status in this group. METHODS: A trained facilitator conducted five semi-structured focus groups during September and November 2003. Participants were recruited through the two paediatric hospitals in Sydney and community-based services, and included general and specialist paediatricians (n = 18), nurses (n = 15) and allied health professionals (n = 13), with an 80% response rate. All sessions were audio- and videotaped. NVIVO software was used to facilitate thematic analysis of the transcribed audiotapes. RESULTS: Responses clustered into five themes: delivery of health services, parent-child interaction, the child's physical and emotional well-being, and social participation. Participants thought the QoL of child and parent was inseparable. Parent-child interaction, delivery of services and physical well-being were the topics which prompted most participant interaction. These findings did not vary across disciplines. CONCLUSIONS: Health professionals identified five domains which provide a framework within which clinicians may comprehensively evaluate the health status of children with QCP and feeding difficulties. These five domains may also be used to inform a new feeding-related QoL instrument for use in this group of patients.     

脑瘫儿童父母生存质量的影响因素分析

目的分析影响脑瘫儿童父母生存质量的相关因素,为医务人员对患儿父母进行心理干预提供理论依据。方法采用自制调查问卷、社会支持评定量表、WHO生存质量测定量表简表(WHOQOL-BREF)等量表对随机分层抽取的50名1⁷岁脑瘫患儿父母进行调查,结果采用多重线性回归的逐步回归法进行统计分析。结果患儿病情越重,父母年龄越大,患儿父母生理领域生存质量越低;患儿社会支持程度越高,患儿父母心理领域、社会关系领域生存质量越高;患儿父母文化程度越高,社会支持程度越大,患儿父母环境领域及总的生存质量越高。结论患儿病情程度、父母年龄、父母文化程度、所获社会支持程度等因素影响着脑瘫儿童父母的生存质量。     

综合康复对脑瘫患儿生存质量的影响

【目的】 探讨综合康复治疗后脑瘫患儿生存质量变化及影响生存质量改变的因素。 【方法】 本研究以2007—2009年在本院就诊的70例2～6岁的脑瘫患儿为研究对象,采用儿童生存质量测定量表(the pediatric quality of life inventory measurement models, PedsQL)4.0作为患儿生存质量的测定工具,综合康复治疗半年后评价患儿生存质量的改变及影响生存质量改变的因素。 【结果】 70例脑瘫患儿中男48例,女22例,平均月龄为(35.3±11.3)月; 7例上幼儿园,入学率仅为10％;其治疗前后得分分别为:生理功能25.40±21.84、31.38±24.98;情感功能64.00±20.16、67.28±18.62;社交功能29.14±21.97、34.50±21.32;PedsQL总分为37.16±16.45、42.22±17.06。经配对设计的t检验,综合康复治疗前后患儿在生理功能、社交功能和PedsQL总分方面的差异具有统计学意义(P<0.01);影响生存质量改变的多因素方差分析表明,家庭月收入在3 000元以上及教育程度为小学的父母对患儿生存质量改变起正向作用。而粗大运动功能分级系统(Gross Motor Classification System, GMFCS)对生存质量的改变不具有统计学意义(P=0.797)。 【结论】 综合康复治疗能提高脑瘫患儿的生存质量,影响因素分析提示要投入更多的人力和财力来提高脑瘫儿的生存质量。     

Identification of Domains Relevant to Health-related Quality of Life in Patients Undergoing Major Surgery

This study examined themes relevant to health-related quality of life as identified by patients undergoing major surgery and by health care providers. Semi-structured interviews were conducted with 52 patients undergoing major abdominal, cardiac, orthopedic, thoracic, or vascular surgical procedures and 33 health professionals from various disciplines. A total of 58 themes were identified by content analysis. These themes were categorized into 6 domains. These were: physical well-being (14 themes), emotional well-being (13 themes), concern about quality of care (12 themes), social well-being (12 themes), cognitive preparation (4 themes), and spiritual well-being (3 themes). In general, we found that most aspects of health-related quality of life were common across various major surgical procedures and between patients and health care providers. However, when we examined the coverage of these themes in seven commonly-used health-related quality of life instruments, we found that many of the most frequently mentioned themes were not assessed with the available measures. A new evaluative instrument tailored to patients undergoing major surgery may therefore be warranted.     

Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients

To assess the impact of cystic fibrosis (CF) and treatment on quality of life (QOL) from childhood throughout adult age, two versions of the Cystic Fibrosis Questionnaire (CFQ), were developed and validated in France: the CFQ 14+ for teenagers and adults, the CFQ Child P, a parent-proxy evaluation for children aged 8–13. They include three modules for assessing QOL, symptoms and health perception. Nine QOL dimensions were identified: physical functioning, energy/well-being, emotions, social limitations, role, embarrassment, body image, eating disturbances and treatment burden. Items were derived from 33 interviews with patients and parents. Item reduction and assessment of internal consistency, convergent and discriminant validity were based on a large cross-sectional survey among 393 patients and parents. A second study was conducted among 124 patients and 85 parents to test reproducibility and responsiveness, confirm the subscale structure and assess scalar properties using Rasch analysis. All psychometric properties were successfully demonstrated and both the CFQ 14+ and the CFQ Child P French questionnaires are now well validated. German and Spanish validated adaptations are available, an English validation is in progress. Conclusion: The CFQ 14+ and CFQ Child P are well validated, multilingual measures which allow QoL assessment in children, teenagers and adults with CF.     

Self-perceived quality of life of Chinese elderly people in Hong Kong

Central to the philosophy of occupational therapy is a commitment to the improvement of clients' quality of life (QOL). There has been a growing interest in the QOL of elderly people in Hong Kong. Social and cultural differences may preclude the application of QOL findings for elderly people in Western countries to their Hong Kong counterparts. This study, which is the preliminary phase of a larger study, explored the QOL of Chinese elderly people in Hong Kong from their own perspective. Focus group interviews were conducted with six Chinese community-residing elderly people who identified the following domains and component elements as being important to their QOL: physical and functional well-being (good health, leisure), psychological well-being (life satisfaction, happiness), social well-being (social interaction, social network/support) and economic well-being (money, housing). Further investigation of factors including self-concept, self-pride, personal autonomy, role fulfilment, and coping ability is required to determine if these are QOL elements for this population. Participants' culturally related philosophical beliefs were found to influence their QOL. Copyright © 1998 Whurr Publishers Ltd.     

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

BACKGROUND: Quality of life is recognized as an important outcome of health services. Ideally, the child's perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities. PURPOSE: In a sample of school-aged children with cerebral palsy (CP), we compared a parent's perspective of their child's quality of life with their child's own perspective, when feasible. METHODS: Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III-V). A parent completed the proxy version and the scores were compared. RESULTS: Intraclass correlation (ICC) coefficients were high for physical (ICC = 0.72, confidence interval [CI]: 0.55-0.83) and moderate for psychosocial (ICC = 0.54, CI: 0.30-0.71) well-being, with the weakest agreement on school functioning and the strongest agreement for ratings of physical health. Parental ratings were more often lower, especially for social functioning, although children rated themselves lower on emotional functioning. Factors associated with a closer agreement between parent-child pairs included older age, male gender, higher social competency, functional abilities, and fewer emotional symptoms (r (2) = 0.07-0.30). CONCLUSION: In children with CP, parents' ratings of their children's quality of life are generally comparable as a group to their child's self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child's own perspective should be considered whenever feasible.     

不同康复治疗方法对脑性瘫痪儿童及其家庭生存质量的影响

目的:通过家庭康复与医院康复的随机交叉试验,观察家庭康复对脑性瘫痪儿童及其家长生存质量的影响和家庭康复对患儿家庭经济的影响。方法:纳入2008年7月～2010年2月在广州中医药大学附属南海妇产儿童医院住院和家庭康复治疗的脑性瘫痪患儿40例,随机分两组,进行医院康复和家庭康复的交叉对照研究,以3个月为1个阶段,共治疗6个月。进行治疗前后自身对照及组间对比。结果:甲组儿童家庭康复前后、医院康复前后生理功能领域及医院康复前后生存质量总分对比有统计学意义,乙组儿童医院康复前后学校表现对比、家庭康复前后生理功能及总体生存质量对比具有统计学意义,甲组家庭康复治疗后、乙组医院康复治疗后儿童及家长生存质量各能区比较无统计学意义。两组家长家庭康复前后、医院康复前后生存质量各能区比较均无统计学意义。两组儿童家庭康复费用远低于医院康复费用。结论:家庭康复可有效促进患儿生存质量的提高,短期家庭康复对家长生存质量影响不明显;家庭康复的经济花费明显低于医院康复治疗。家庭康复是一种经济、有效、实用、方便的康复方式。     

What does quality of life mean to older frail and non-frail community-dwelling adults in the Netherlands?

Quality of life is a commonly used but seldom defined concept and there is no consensus on how to define it. The aim of this study was to explore the meaning of quality of life to older frail and non-frail persons living in the community. Qualitative interviews were conducted with 25 older men and women. The audio-taped interviews were transcribed and coded for content and analyzed using the grounded-theory approach. Five themes emerged: (physical) health, psychological well-being, social contacts, activities, and home and neighborhood. Factors that influenced quality of life were having good medical care, finances and a car. Respondents compared themselves mostly to others whose situation was worse than their own, which resulted in a satisfactory perceived quality of life. However, the priorities of the domains of quality of life were observed to change. Moreover, the health of the frail limited the amount and scope of activities that they performed. This led to a lower quality of life perceived by the frail compared to the non-frail.     

注意缺陷多动障碍儿童的生存质量和相关影响因素分析

目的 探讨注意缺陷多动障碍（ADHD）儿童的生存质量及其影响因素,为提高患儿的生存质量提供理论依据。方法 使用儿童生存质量测定量表（pediatric quality of life inventory TM version 4.0,PedsQL TM 4.0）中文版普适性核心量表、自制家庭环境量表对儿童及其父母评估。对92例ADHD患儿和88例正常儿童进行生存质量和家庭环境的病例对照研究。结果 ADHD儿童生存质量评分总分比对照组低,父母报告评分总分比对照组低。ADHD儿童父母的生存质量在生理、心理、社会关系、环境4个领域中都明显低于正常组父母。儿童的生存质量受父母的文化程度、家庭教养方式、父母间关系和社区环境等因素影响。结论 ADHD组儿童的生存质量受到明显的影响,应进一步完善ADHD儿童的治疗方案,为患儿及其家庭成员提供更多的支持和帮助,提高ADHD儿童的生活质量。     

An exploratory study of parents' approaches to health promotion in families of adolescents with physical disabilities

Background The life expectancy of children with physical disabilities now extends into adulthood and has been accompanied by the transfer of rehabilitation services from institutions to the home. Thus, families must increasingly partner with health service providers to promote their child's health and prevent the development of secondary conditions that may contribute to heart disease, stroke, respiratory diseases, low endurance and emotional difficulties. Aim To investigate within a family context the health promotion efforts of parents on behalf of a child with a physical disability. Method The Long Interview Method was used to interview 15 families (11 two‐parent and 4 single‐parent) having a child 11–16 years of age with a physical disability including cerebral palsy (7), spina bifida (3), muscular dystrophy (3) and other conditions (2). Results Parents' health promotion efforts were characterized by three main themes. First, parents emphasized traditional lifestyle health behaviours including nutrition, physical activity, tobacco, alcohol and drug use, and personal hygiene. Second, parents tried to foster their adolescent's social life and friendships. They expressed particular concern about how, and if, their child would develop a sense of purpose and have a productive future. Third, parents invested a great deal of effort into observing daily routines, making arrangements for their child's social inclusion and supporting their child in a way that balanced independence with safety and energy conservation. Conclusions Parents recognize that their child with a physical disability faces greater obstacles, and work hard at health promotion. Healthcare workers need to work with parents to: (1) provide information about specific lifestyle health behaviours including nutrition, physical activity and sexuality; (2) advocate for resources to foster social inclusion; and (3) discuss family strategies that balance parental involvement with their child's need for independence and energy conservation for daily activities.     

脑瘫患儿家长应对方式与社会支持的相关性研究

目的:探讨脑瘫患儿家长医学应对方式趋向与获得社会支持程度的相关性。方法:采用医学应对问卷(MC-MQ)和社会支持评定量表(SSRS)对61名脑瘫患儿家长进行调查。结果:脑瘫患儿家长回避和屈服维度得分较高,与国内常模相比差异有统计学意义(P<0.01);脑瘫患儿家长面对维度得分与社会支持得分呈正相关(P<0.01),回避和屈服维度得分与社会支持得分呈负相关(P<0.05)。结论:脑瘫患儿家长应对方式趋向于回避和屈服,家长获得的社会支持程度越高,越趋向于积极的应对方式。     

留守儿童生存质量与心理健康的相关性及影响因素分析

目的 分析留守儿童生存质量与心理健康的相关性及留守儿童生存质量的影响因素,为改善留守儿童生存质量提供理论依据。方法 2017年9月-2020年9月抽取本地区某小学四年级至六年级208名留守儿童进行调查,用儿童生存质量普适性核心量表(PedsQL4.0)评价留守儿童生存质量,用心理健康诊断测验(MHT)评价留守儿童心理健康状况。用Pearson相关分析法分析留守儿童生存质量与心理健康的相关性,用多元线性逐步回归模型分析影响留守儿童生存质量的因素。结果 留守儿童PedsQL4.0量表结果总分为(80.52±9.58)分,MHT测验结果显示总分为(8.27±0.99)分。留守儿童生存质量得分与心理健康得分均呈负相关(P＜0.05)。多因素分析显示影响留守儿童生存质量总分的因素有照顾者受教育程度、有无兴趣爱好、与父母联系频率、父母外出务工时间(β=3.122、4.057、2.524、-2.018,P＜0.05)。结论 留守儿童生存质量与心理健康密切相关,照顾者受教育程度、有无兴趣爱好、与父母联系频率、父母外出务工时间等因素均能影响留守儿童生存质量。     

脑瘫儿童营养状况的影响因素研究进展

脑性瘫痪是继发于婴幼儿早期中枢神经系统损伤的一种姿势和运动发育障碍。近20年来,人们不仅只关注脑瘫儿童的肢体残疾问题,还会关注其营养健康问题。已有的研究发现脑瘫儿童存在多方面的营养问题。这些问题不仅会影响脑瘫儿童的预后,还会影响脑瘫儿童的生长发育甚至预期寿命。脑瘫儿童的营养问题已被康复临床所关注。本文综述近年来国内外文献并多维度分析影响脑瘫儿童营养状况的因素,希望为脑瘫儿童的临床营养干预提供切入点。     

脑性瘫痪患儿家长社会支持与患儿遵医行为调查分析

目的:了解脑性瘫痪(CP)患儿家长的社会支持状况与患儿遵医行为关系。方法:采用社会支持评定量表(SSRS)和自行设计调查问卷对62例CP患儿家长进行调查分析。结果:SSRS高分组与低分组相比,高支持组患儿家长完全按时复诊(70.97%)、完全遵照日常指导进行功能锻炼(51.61%),完全不按时复诊(0.00%)、完全不遵照日常指导进行功能锻炼(0.00%)与低支持组(分别为29.03%、6.45%、35.48%、45.16%)比较,差异均有统计学意义(P<0.001),而不完全按时复诊(29.03%),不完全遵照日常指导进行功能锻炼(48.39%)与低支持组(分别为35.48%、48.39%)比较差异无统计学意义(P>0.05)。结论:社会支持对CP患儿遵医行为有明显促进作用,通过加强CP患儿家长社会支持的一系列有效措施,可以提高遵医行为,医护人员在患儿家长社会心理护理中起到重要作用。     

A prospective,longitudinal study of growth,nutrition and sedentary behaviour in young children with cerebral palsy

Background  

Cerebral palsy is the most common cause of physical disability in childhood, occurring in one in 500 children. It is caused by a static brain lesion in the neonatal period leading to a range of activity limitations. Oral motor and swallowing dysfunction, poor nutritional status and poor growth are reported frequently in young children with cerebral palsy and may impact detrimentally on physical and cognitive development, health care utilisation, participation and quality of life in later childhood. The impact of modifiable factors (dietary intake and physical activity) on growth, nutritional status, and body composition (taking into account motor severity) in this population is poorly understood. This study aims to investigate the relationship between a range of factors - linear growth, body composition, oral motor and feeding dysfunction, dietary intake, and time spent sedentary (adjusting for motor severity) - and health outcomes, health care utilisation, participation and quality of life in young children with cerebral palsy (from corrected age of 18 months to 5 years).     

To what extent do children with cerebral palsy participate in everyday life situations?

The aims of the study are to describe participation of children with cerebral palsy in everyday life situations, to investigate the relationship between participation (primary outcome variable) with child and parent characteristics (independent variables) and to compare the frequency of participation (secondary outcome variable) of children with cerebral palsy with children without disabilities. A cross‐sectional survey of parents of children with cerebral palsy in Northern Ireland was undertaken in families’ homes using standard questionnaires. Children with cerebral palsy born between 31/8/1991 and 1/4/1997 were identified from a case register of people with the condition. A total of 102 parents opted in (51% response rate). Questionnaires included the Life Habits Questionnaire (Life‐H) to measure difficulties in participation and The Frequency of Participation Questionnaire (FPQ), to measure frequency of participation with comparative data for children without disability. Overall, children with cerebral palsy participated less often than their non‐disabled peers across a number of lifestyle and cultural pursuits. Among the 102 children with cerebral palsy, participation in ‘relationships’ was the least disrupted area of everyday life and aspects of ‘school’, ‘personal care’ and ‘mobility’ were the most disrupted. Children with cerebral palsy and severe co‐impairments were significantly less likely to experience higher levels of participation in most areas of everyday life when compared to children with cerebral palsy and no severe co‐impairments. Child physical and psychological well‐being did not influence participation although higher parenting stress was significantly related to lower child participation in ‘community activities’. Participation is an important health outcome for children with cerebral palsy and should be incorporated in routine clinical practice. Professionals have a role to play both at the level of addressing individual child and family needs as well as influencing legislation and policy to ensure improved access to services and local communities.     

浅析社会工作介入在儿童福利机构脑瘫儿童康复治疗中的应用

脑瘫儿童康复治疗工作备受关注,脑瘫病症一旦在儿童身上出现,会对患儿自身及儿童福利机构带来沉重压力。儿童福利机构脑瘫儿童康复期间,社会工作及时介入,一定程度上为儿童福利机构提供支持,因为工作人员凭借专业知识及技能帮助脑瘫儿童早日康复,促进患儿身心健康发展。文章通过阐述儿童福利机构运用社会工作方法介入脑瘫儿童康复治疗的情况,分析具体工作中存在的问题,提出改进思路,从而提高脑瘫疾病治疗质量,提升孤残儿童幸福指数。