Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review

Children and youth with cerebral palsy (CP) experience difficulties in their ability to move, problem solve, socialize, and communicate, associated with limitations in activities in all environments. They are at risk for lower participation in social and leisure activities critical in fostering friendships, developing interests, and promoting well-being. Little is known about involvement in leisure activities and their determinants. This systematic review aims to describe participation in leisure activities by children with CP and identify personal and environmental factors that influence participation. The following databases were reviewed--CINAHL, Medline, Cochrane, Web of Science, OT-seeker, and REHABDATA--using the keywords participation, cerebral palsy, leisure, and recreation. The literature to date suggests that children with physical disabilities are less involved in leisure activities than their peers; activities are more passive, home based, and lack variety. Several factors influence participation in leisure activities, including age, gender, activity limitations, family preferences and coping, motivation, and environmental resources and supports.     

A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities

Participation in everyday activities is considered to be a vital part of children's development, which is related to their quality of life and future life outcomes. Research studies indicate that children with disabilities are at risk for lower participation in ordinary activities at home and in the community. This article presents a conceptual model of 11 environmental, family, and child factors that are thought to influence children's participation in recreation and leisure activities. The article outlines the existing evidence for the influence of these factors on one another and on children's participation. The review encompasses four bodies of literature: the participation of children or adults with disabilities, the risk and resilience of children facing adversity, the determinants of leisure and recreation activities, and the factors influencing physical activity and exercise. The proposed model is expected to be a useful tool for guiding future research studies and for developing policies and programs for children with disabilities and their families.     

A multivariate model of determinants of change in gross-motor abilities and engagement in self-care and play of young children with cerebral palsy

A multivariate model of determinants of change in gross-motor ability and engagement in self-care and play provides physical and occupational therapists a framework for decisions on interventions and supports for young children with cerebral palsy and their families. Aspects of the child, family ecology, and rehabilitation and community services may influence children's activity and participation. Aspects of the child include primary and secondary impairments, associated and comorbid health conditions, and adaptive behaviors. Literature support for the model is reviewed. A clinical scenario illustrates the use of the model as a framework for practice. The model encourages therapists to broaden the focus of rehabilitation services for young children with CP to include not only development of motor abilities but also comprehensive interventions and supports to enhance participation in daily activities and routines. Therapists are encouraged to consider how child, family, and service factors interact when planning interventions and evaluating outcomes.     

Relationship of nutritional status to health and societal participation in children with cerebral palsy

OBJECTIVES: To describe nutritional status in a population-based sample of children with moderate or severe cerebral palsy (CP) and to explore the relationships between nutritional status and health and functional outcomes. STUDY DESIGN: A population-based strategy was used to enroll children with CP at 6 geographic sites. Research assistants performed anthropometric assessment, determined severity of motor impairment, and interviewed caregivers with the Child Health Questionnaire and a questionnaire designed specifically for this study. Anthropometric measures were converted to Z scores and the relationship between health and nutritional status was assessed using regression models. RESULTS: Among the 235 participants, indicators of malnutrition were common. Poor nutritional status correlated with increased health care utilization (hospitalizations, doctor visits) and decreased participation in usual activities by the child and parent. CONCLUSIONS: Malnutrition is common in children with moderate or severe CP and associated with poorer health status and limitations in societal participation. Further studies are needed to determine the nature of these associations and how to manage nutrition in children with CP to optimize growth and health outcomes.     

Changes in Muscle Activation Following Ankle Strength Training in Children with Spastic Cerebral Palsy: An Electromyography Feasibility Case Report

ABSTRACT

Children with cerebral palsy (CP) are likely to experience decreased participation in activities and less competence in activities of daily living. Studies of children with spastic CP have shown that strengthening programs produce positive results in strength, gait, and functional outcomes (measured by the Gross Motor Function Measure). No investigations have analyzed electromyography (EMG) activity before and after strength training to determine whether any changes occur in the GMFM. This feasibility case report quantified dorsiflexor and plantarflexor muscle activation changes during performance of 3–5 selected GMFM items following a plantarflexor strength training in two children with cerebral palsy. Increased plantarflexor strength and increased ability to selectively activate muscles were found. Little carryover to performance on GMFM items was observed. It is feasible to use EMG during performance on selected GMFM items to evaluate motor control changes following strength training in children with CP.     

A Review of: “PEDIATRIC PHYSICAL THERAPY, (4th ed.) Edited by J. S. Tecklin”

ABSTRACT

Youth with cerebral palsy (CP) face significant barriers to participation in physical activity (PA). There is little information available about the nature of these barriers. Seventeen (17) youth and/or their parents participated in focus groups and individual interviews to identify factors that make it easy or hard to be physically active. Four themes emerged across functional levels: environmental and personal factors, limitations related to impairment in body structure and function, the perception that health benefits alone do not motivate youth to be physically active, and variable preferences for activity delivery. Dialogue with participants revealed that interventions to promote PA in youth should mitigate the interactions between personal and environmental factors that act as barriers to PA, and enhance the interactions that facilitate PA. Partnerships between researchers, policy makers, service providers, and families must be developed to address system barriers and build capacity in youth with CP and their communities.     

Focus on Function – a randomized controlled trial comparing two rehabilitation interventions for young children with cerebral palsy

Background  

Children with cerebral palsy receive a variety of long-term physical and occupational therapy interventions to facilitate development and to enhance functional independence in movement, self-care, play, school activities and leisure. Considerable human and financial resources are directed at the "intervention" of the problems of cerebral palsy, although the available evidence supporting current interventions is inconclusive. A considerable degree of uncertainty remains about the appropriate therapeutic approaches to manage the habilitation of children with cerebral palsy. The primary objective of this project is to conduct a multi-site randomized clinical trial to evaluate the efficacy of a task/context-focused approach compared to a child-focused remediation approach in improving performance of functional tasks and mobility, increasing participation in everyday activities, and improving quality of life in children 12 months to 5 years of age who have cerebral palsy.     

Pros and cons of gastrostomy feeding in children with cerebral palsy

At least a third of children with moderate to severe cerebral palsy (CP) will have feeding difficulties. Malnutrition should not be considered normal in children with CP. Early, persistent, and severe feeding difficulties are a marker for subsequent poor growth and developmental outcomes. Growth patterns in children with cerebral palsy are associated with their overall health and social participation. Growth restriction increases progressively with age and thus mandates early nutritional intervention. In children with severe CP such nutritional intervention is increasingly being administered by gastrostomy feeding tube but controversy surrounds the evidence-base for this approach. Moreover, mothers' decisions about gastrostomy feeding are complex and difficult and must be taken into account in making therapeutic recommendations. This paper discusses the available research evidence and psychosocial issues around gastrostomy feeding in children with severe CP. It seeks to provide a basis for rational clinical decision-making based upon the integration of the best available research evidence with clinical experience and patient values.     

Stability of playfulness across environmental settings: a pilot study

The Test of Playfulness (ToP) was used in this pilot study to examine the stability of playfulness of 16 children with cerebral palsy (CP), aged 4-8 years, across three environmental settings: home, community, and school. Each videotaped play segment was scored using the ToP. The ANOVA statistic demonstrated a significant variance (p < 0.05) in the playfulness of the children across the 3 settings. The children were most playful at home and least playful at school (p < 0.05). The variability in playfulness across settings suggests that playful behaviors are influenced by factors external to the child. Eleven children were playful (achieving a positive ToP score) in at least one environment, which demonstrates that they had the capacity to be playful. Their play was supported in some settings and not in others. However, there was a lack of playfulness in 65% of the play segments suggesting that these children experience many barriers to their participation in play. Future research is needed to identify factors that help and hinder the playfulness of children with CP.     

Partizipation von 8- bis 12-jährigen Kindern mit Zerebralparese in Schleswig-Holstein

Aim of the study

Participation, defined as the ability to be involved in social situations in society, is an important outcome for children to maximize their development potential but little is known about the frequency of participation of disabled children. This study investigated how participation varied between children with cerebral palsy and the general population and how personal factors influenced the frequency of participation.

Methods

In this study children between 8 and12 years of age with diagnosed cerebral palsy, born in Schleswig-Holstein, a northern region in Germany were included and recruitment was through primary care physicians. Healthy school children from a number of regional schools in Schleswig-Holstein served as a collective for comparative data. Information was obtained on age, sex, social status and pain in all children and on the level of motor and cognitive impairment in children with cerebral palsy. To measure participation in everyday activities the ‘Frequency of Participation Questionnaire’ developed from the Life-H instrument was used.

Results

A total of 73 children with cerebral palsy and 1,092 school children participated in the study. Both groups were similar regarding age, sex and social status. Children with cerebral palsy suffered pain more often and more intensely. Children with cerebral palsy with pain and those with more severely impaired walking skills and cognitive abilities reported a lower participation in general. The ‘Frequency of Participation Questionnaire’ demonstrated significant differences in participation in 8 out of 14 questions, with less participation in 7 out of 8 tested activities for children with cerebral palsy independent of age or sex.

Conclusion

Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population.     

European study of frequency of participation of adolescents with and without cerebral palsy

Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments.Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations. Domains and single items were analysed using respectively linear and logistic regression.Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations.Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services.     

CPIPS: musculoskeletal and hip surveillance for children with cerebral palsy

CPIPS (Cerebral Palsy Integrated Pathway Scotland) provides access for all children with cerebral palsy (CP) aged between 2 and 16 years in Scotland for a standardized musculoskeletal examination of the spine and lower limbs by paediatric physiotherapists. Children with more severe CP are at risk of developing a displaced hip joint which can become painful and interfere with seating and daily activities. Therefore all children also receive regular X-rays of their hips based on their age and severity of CP. CPIPS has been universally accepted and approved by the children, parents, carers and clinicians alike. It provides useful data on epidemiology, hip subluxation, physiotherapy participation and orthotic use as well as much more. It is already producing a significant improvement in hip displacement rates in Scotland. CPIPS has also greatly improved communication between community based care and hospital services. It is now fully embedded in the day to day care of these vulnerable children in Scotland and is now deemed essential in improving and maintaining their musculoskeletal health.     

脑性瘫痪患儿生存质量相关因素多重线性回归分析

目的 分析影响脑性瘫痪(脑瘫)儿童生存质量的相关因素.方法　将确诊为脑瘫的80例患儿作为脑瘫组,同时选择80例同龄健康儿童作为健康对照组.采用儿童生存质量的PedsQL4.0普适性核心量表对2组儿童的生存质量进行评定,比较2组儿童生存质量的差异;采用粗大运动功能分级系统(GMFCS)评定脑瘫患儿粗大运动功能的级别,采用北京Gesell发育商评定脑瘫患儿的智力水平;采用多重线性回归分析脑瘫患儿生存质量与性别、月龄、家庭月收入、临床分型、GMFCS及智力水平6种相关因素之间的关系.结果 脑瘫组患儿的生理功能/领域、情感功能、社会功能、心理领域及总体生存质量均显著低于健康对照组儿童,差异均有统计学意义(Pa＜0.01).脑瘫患儿总体生存质量与智力水平呈相同趋势,智力水平越高,生存质量亦越高;脑瘫患儿生理领域生存质量与智力水平、GMFCS呈正向关系,与月龄呈反向关系,其中GMFCS对生存质量的影响最严重;患儿的心理领域与智力水平相关.结论　脑瘫患儿生存质量存在明显损害,智力水平及运动功能是影响其生存质量的重要因素.     

脑瘫患儿口运动与进食和营养问题

目的　分析脑瘫患儿口运动与进食障碍的发生率与症状学 ,并对营养状况进行初步评价。方法　 2 0 0 2年 3月～ 2 0 0 3年 3月住院康复的脑瘫患儿 5 9例 ,男 39例 ,女 2 0例 ,平均年龄 31个月 (2 0～ 72个月 )。父母问卷调查了解高危因素、喂养史 ,神经病学检查评价脑瘫类型 ,Gesell发育评分评价运动发育年龄 ,测体重、身高评价营养状况 ,对所有患儿进行口运动与进食技能评分与现场观察 ,按年龄、性别匹配对照组进行对比分析。结果　 5 9例患儿中口运动障碍 5 1例 ,所有徐动型和痉挛型四肢瘫、16例痉挛型双瘫患儿存在口运动异常 ,脑瘫组平均口运动评分为 (2 5± 15 )分 ,低于对照组儿童 (t=11 5 87,P <0 0 0 1)。口运动异常涉及下颌、唇、舌的各个运动测试亚项。 5 5例患儿存在进食方面问题 ,绝大多数患儿进食过程中需要家长帮助 ,半数患儿仅能进食流质和 (或 )半流质 ,不能进食固体食物。进食技能障碍主要表现在口相和口前相 ,脑瘫组进食技能分平均 (35± 11)分 ,亦明显低于对照儿童 (t=4 5 5 2 ,P <0 0 0 1) ,徐动型总分较低 ,其次是痉挛型四肢瘫。脑瘫组 13例患儿体重低于第 2 5百分位数 ,19例患儿身高低于第 2 5百分位数 ,提示体格发育存在受阻现象。结论　绝大多数脑瘫患儿存在口运动和进食障碍 ,     

Participation of children with special health care needs in school and the community

ObjectiveChildren with special health care needs (CSHCN) are at risk for decreased participation in educational and social activities, which can negatively impact their lives. The objectives of this study were to document the presence of participation restrictions for CSHCN compared with other children and to determine how personal and environmental factors are associated with participation restrictions for CSHCN.MethodsThe 2007 National Survey of Children’s Health was analyzed to evaluate 2 participation outcomes for children aged 6 to 17 years, ie, school attendance and participation in organized activities, and 2 participation outcomes for children aged 12 to 17 years, ie, working for pay and volunteering. Adjusted prevalences of participation restrictions were calculated for children with and without special health care needs. Logistic regression was used to identify factors independently associated with participation restrictions for CSHCN.ResultsAfter adjustment for sociodemographic characteristics, a greater proportion of CSHCN (27.9%) reported missing more than 5 days of school than other children (15.1%). In contrast, no differences were found for participation in organized activities, working for pay, or volunteering. CSHCN with functional limitations were more likely to experience all 4 types of participation restrictions compared with other CSHCN and non-CSHCN. For CSHCN, the odds of certain participation restrictions were greater for those with functional limitations, in fair/poor health, with depressed mood, living at or near the federal poverty level, and living in homes not headed by two parents.ConclusionsCSHCN with functional limitations and those with worse health status are at elevated risk of experiencing participation restrictions than other children. Social disadvantage furthers the likelihood that CSHCN will experience participation restrictions.     

SCPE的工作、标准化和定义-SCPE活动概貌:欧洲脑瘫登记协作网(英文)

欧洲脑瘫监测组织(SurveillanceofCerebralPalsyinEurope,SCPE)协作网络的主要目的是建立欧洲脑瘫病例的中央数据库。对脑瘫患病率变化趋势的监控有利于对脑瘫危险因素的研究以及提高脑瘫患儿的生活质量。在脑瘫多中心协作登记工作中,为了准确一致地鉴定脑瘫病例,研究人员采用明确、统一的脑瘫定义。SCPE协作组发现每1000个存活儿中脑瘫的患病例为1.5～3例。在1980至1996年间的出生组群中(n=9128),53.9%的脑瘫患儿为双侧痉挛性脑瘫,31.0%的为单侧痉挛性脑瘫,6.6%为运动障碍,4.1%为共济失调。在脑瘫患儿中,20.4%患儿出生体重不足1500g,而25.5%的孕龄不足32周。29.5%的脑瘫患儿出现了智力障碍(IQ<50)。不能步行(甚至在协助下)的脑瘫患儿比例为30.3%。12.5%的脑瘫患儿出现了严重的视力缺损。做好登记工作有助于了解脑瘫流行病学的特征,是进行脑瘫流行病学研究的一种最佳方式。     

A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in northeast England

PURPOSE: The social model of disability considers participation to be determined by the social, attitudinal and physical environments experienced by an individual. This study aims to ascertain from families of children with cerebral palsy the features of such environments which facilitate or restrict participation. METHOD: Thirteen in-depth interviews using a topic guide were conducted with the parents of children with cerebral palsy. Interviews were tape-recorded, transcribed and analysed with NVivo software. RESULTS: The main themes emerging from the interviews were the importance of mobility, transport, support by and to parents and attitudes of individuals and institutions towards children. Most parents did not raise the policies and legislation determining participation barriers, although these are also likely to be influential. CONCLUSIONS: This study confirms the importance of the environment for the participation of children with cerebral palsy. Statutory agencies need to attend the attitudes and policies in their organization in order to plan the inclusive environments which parents report will facilitate their child's participation. This study also contributes to the development of a tool to quantify the environment to allow the development of models to determine the environments which maximize children's participation.     

Parent‐perceived barriers to participation in children and adolescents with cerebral palsy

Aim: To pilot the use of the Craig Hospital Inventory of Environmental Factors (CHIEF) questionnaire to ascertain information regarding barriers to participation experienced by a sample of New Zealand children with cerebral palsy. Methods: The CHIEF questionnaire was administered to parents/caregivers of a consecutive sample of 32 children with cerebral palsy attending a paediatric tertiary clinic in Auckland. Twenty‐three children walked independently, 5 used walking aides and four used a wheelchair. Twenty‐four of the 32 parent‐respondents provided contextual feedback for their responses and wider issues relating to the topic. Results: The barriers to participation most commonly reported by parents were attitudes at school (72%) and in the community (56%), difficulties accessing personal equipment (59%), and the natural environment and built surroundings (56%). Contextual information from families generally supported their answers to the questionnaire but highlighted that some parents had confused the ‘not applicable’ and ‘never’ options. Discrepancy between scores on the policy‐related questions and later contextual feedback suggested that the policy subscale did not fully capture family concerns about limited availability of public funding for equipment, therapy, and educational support. Conclusions: The CHIEF instrument proved easy to use in a clinic setting. However, parent‐respondent feedback highlighted the difficulties in interpreting responses to some items when the instrument is used in isolation to quantify environmental barriers to participation. The results highlight the need to develop research approaches and tools that can explore barriers to participation by children with cerebral palsy taking account of socio‐economic and other relevant contextual information.