Perceived environmental restrictions for the participation of children with mild developmental disabilities

Aim In light of the International Classification of Functioning, and Health (ICF) model, to assess whether parents of children with mild developmental disabilities perceived various environmental factors as barriers to their child's participation, and whether these factors have a unique contribution to the total explained variance of participation, beyond personal factors. Methods Seventy-nine kindergarten children (mean age 5.20 ± 0.52 years old) with mild developmental disabilities and their parents participated in the study. Three questionnaires measuring the child's participation, performance skills and environmental factors were completed by the parents. Results Parents perceived environmental factors as slightly restricting to their child's participation. Associations were found between home and education factors and the dimensions of child participation - independence, enjoyment and parental satisfaction. Although parents perceived human environmental factors as more restricting than physical factors at home, regression analysis revealed that the latter was found to affect the child participation dimension of independence beyond the contribution of personal factors. Interpretation These findings are the first, to our knowledge, to support the contribution of environmental factors to the participation of young children with mild developmental disabilities. The results show that environmental factors have significant slight contribution to child's independence in participation beyond other predictors (i.e. personal factors). Therefore, it is recommended to include environmental restrictions measurement in the child evaluation process to facilitate effective intervention programs.     

Out‐of‐school time activity participation profiles of children with physical disabilities: a cluster analysis

Objective To determine out‐of‐school activity participation profiles of school‐aged children with physical disabilities. Methods Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill‐based, self‐improvement). Socio‐demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio‐demographic, self‐concept and social support variables significantly associated with group membership. Results The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood‐focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio‐demographic, child, parent, family and environmental variables. Conclusions The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person–environment approach in understanding the complexity of children's out‐of‐school activity participation.     

中国1987—2006年母婴安全相关残疾分析

目的 了解中国0~6岁儿童与母婴安全相关的残疾现患率及不同年份的残疾变化情况。方法 利用1987年第一次和2006年第二次全国残疾人抽样调查数据,以0~6岁儿童为研究对象,利用SPSS 16.0软件分析不同特征儿童与母婴安全相关残疾的分布,比较1987—2006年母婴安全相关残疾变化趋势。结果 2006年与母婴安全相关残疾现患率为7.86‰,高于1987年的7.16‰;1987年男童残疾现患率为7.48‰,女童为6.66‰,差异有统计学意义（χ²=5.295,P=0.022）;2006年男童残疾现患率为8.55‰,女童为7.04‰,差异有统计学意义（χ²=13.835,P<0.001）;1987年农村地区儿童残疾现患率为7.62‰,城镇为5.65‰,差异有统计学意义（χ²=21.886,P<0.001）;2006年农村地区为8.55‰,城镇地区为6.00‰,差异有统计学意义（χ²=31.298,P<0.001）。结论 中国与母婴安全相关的残疾情况较为严重,20年间中国母婴保健不良的结局正在经历“从死亡向带残生存”的模式转变。     

Priority setting for children and young people with chronic conditions and disabilities

Background

The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.

Methods

We conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia.

Results

In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis.

Conclusions

The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area.

Patient or Public Contribution

This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.     

Maternal smoking,demographic and lifestyle factors in relation to daughter's age at menarche

A previous study suggested a younger age at menarche (AAM) among daughters of heavy prenatal smokers, especially among non‐Whites. The present study was designed to evaluate that association in another population and to examine other factors that may be related to AAM. We analysed data from the Collaborative Perinatal Project, a nationwide longitudinal study of pregnant women and their children conducted in 1959–66. At three sites, with a predominance of Black participants (80%), AAM was ascertained in the offspring when they were young adults. We included data on 1556 daughters who had a mean AAM of 12.7 years (standard deviation 1.8). Amount smoked by the mothers was obtained from a baseline interview and subsequent prenatal visits. Regression models were run including maternal smoking and other covariates, for only the prenatal period, as well as in models with some childhood characteristics. In the prenatal factor model, younger mean AAM in daughters was found with maternal characteristics of earlier AAM, being married, and of lower parity. Examining childhood variables, earlier AAM was found among girls with few or no siblings or with higher socio‐economic status. Unlike our previous findings, mean AAM was later in daughters of heavy smokers (20+ cigarettes/day), with a delay of 0.31 years [95% confidence interval (CI) 0.008, 0.61], or about 3.7 months in the prenatal model, and 0.34 years [95% CI ?0.02, 0.66] in the model with childhood variables included. The pattern was consistent by race. A number of prenatal and childhood factors related to AAM were identified that should be considered when examining exogenous exposures in relation to pubertal onset.     

Parenting children with neurodevelopmental disorders and/or behaviour problems

Background Parenting behaviours influence child well‐being and development. However, much of the research on parenting behaviours and their correlates has focused on caregivers of healthy, typically developing children. Relatively less is known about the parenting behaviours of caregivers of children with chronic health conditions. Objective To examine and compare three parenting behaviours (positive interactions, consistency and ineffective parenting) among caregivers of children with neurodevelopmental disorders and/or externalizing behaviour problems, before and after accounting for child and family socio‐demographic characteristics. Methods Participants (n= 14 226) were drawn from the National Longitudinal Survey of Children and Youth, a long‐term study of Canadian children that follows their development and well‐being from birth to early adulthood. Children (and their caregivers) were divided into four groups according to the presence of a neurodevelopmental disorder (NDD; n= 815), the presence of an externalizing behaviour problem (EBP; n= 1322), the presence of both conditions (BOTH; n= 452) or neither of these conditions (NEITHER; n= 11 376). Results Caregivers of children in the NEITHER group reported significantly higher positive interaction scores and lower ineffective parenting behaviours than caregivers of children in any of the other three groups. Caregivers of children in the EBP and BOTH groups reported similar levels of consistency, but significantly lower levels than caregivers of NDD or NEITHER children. These associations largely remained after accounting for child and family socio‐demographic characteristics, with two exceptions: caregivers' reports of positive interactions were no longer significantly associated with child's NDD and BOTH conditions. Conclusions Parenting children with multiple health conditions can be associated with less positive, less consistent and more ineffective parenting behaviours. Understanding the factors that are associated with the challenges of caring for these children may require additional research attention.     

Behavioural profile and maternal stress in Greek young children with Williams syndrome

Background Williams syndrome (WS) is a genetic disorder causing intellectual disability. Children with WS often exhibit various kinds of maladaptive behaviours that affect their social functioning. In order to determine whether these behaviours are syndrome-specific, it would be necessary to compare children with WS with children with other syndromes as well as to provide data on the socio-emotional profile in WS from a variety of cultures. The present study investigated the behavioural profile and its relation to maternal stress in Greek young children with WS in comparison with young children with Down syndrome and typically developing (TD) children. Methods Participants were 60 mothers, 20 in each syndrome group and 20 in the control group. The three groups were matched for mental age. The behavioural profile of the participants was investigated through the Child Behaviour Checklist (1.5-5 years) and maternal stress through the Parental Stress Index. Results In accordance with studies in other cultures, it was found that young children with WS received significantly higher rates in emotional problems and anxiety/depression, compared with both children with Down syndrome and TD children. Moreover, mothers of children with WS reported significantly higher scores in the Total Stress index compared with mothers of TD children. However, in contrast with previous studies, only 25% of children with WS fell into the clinical range in the total Child Behavior Checklist score. Conclusion The consistency of the socio-emotional characteristics of children with WS across cultures and developmental stages implies a strong influence of the genetic phenotype. However, Greek mothers avoided to characterize these behaviours as pathological. Implications of these findings for clinical practice are also discussed.     

动作技能干预对智力障碍儿童青少年基本动作技能影响的系统综述

目的 系统分析国内外动作技能干预对智力障碍儿童青少年基本动作技能影响的方法学特点和效果。方法 对CNKI、Wan Fang Data、EBSCO-SPORT、Web of Science、PubMed 5个数据库进行检索,检索日期从建库到2021年6月3日。对纳入文献的国家和地区、实验设计、样本、干预、测评和结果等信息进行提取,并使用PEDro对纳入文献进行方法学质量评价。结果 共纳入11篇文献,有效干预为100%;干预内容集中于平衡、力量和协调;游戏形式的低强度干预,单次干预时间40~60 min,每周2~3次,6~8周的干预较为适宜;测评工具以BOTMP使用数量最多,测评维度多集中于平衡技能。结论 动作技能干预可以有效提高智力障碍儿童青少年的基本动作技能。建议丰富干预内容,提高研究质量,加强我国样本的相关研究,并研制科学有效的智力障碍儿童青少年基本动作技能测评工具。     

Questioning the answer: questioning style,choice and self‐determination in interactions with young people with intellectual disabilities*

For young people with intellectual disabilities (ID), the transition from children’s to adult services has long been recognised as a challenging move. One of the aims of the White Paper Valuing People (2001) was to address some of the problems associated with this transition. This paper reports on data from a project which examines the impact of these service changes, and the ways in which transition is negotiated by carers, professionals and users. It presents a conversation analysis of eight tape‐recorded formal review meetings at which transition to adult services is discussed. It takes as its starting point the existing interactional work on ID and the way in which this demonstrates the effects of the local and contextual specifics of particular kinds of interaction on the eventual outcomes (e.g. Rapley 2004 , Antaki 2001 , Maynard and Marlaire 1992 ). We show that an attempt to allow self‐determination in the context of transitions can paradoxically result in undermining user choice and control. We also argue that, while a rule‐based approach to practice may offer moral clarity for professionals, it can result in interactional and practical difficulties which cannot be easily reconciled.     

Mealtime interaction patterns between young children with cerebral palsy and their mothers: characteristics and relationship to feeding impairment

Background A significant proportion of children with cerebral palsy have some degree of feeding impairment, which not only affects their ability to obtain adequate nourishment, but may also impinge on their ability to interact with their mothers during mealtimes. The quality of the maternal–child interaction may also be affected by the mealtime being prolonged and/or stressful. Patterns of interaction between mothers and their children with cerebral palsy have typically been described in play situations. There is limited information about interaction during mealtimes. The purpose of this study therefore, was to observe and describe the characteristics of mealtime interaction between mothers and their young children with cerebral palsy, and to determine whether feeding impairment and other sample characteristics were related to interaction patterns. Methods The participants were 20 mothers and their children with cerebral palsy. Physical, cognitive, and feeding abilities varied. Video recordings of each mother–child dyad interacting during a typical mealtime were analysed in order to describe the structure of the interaction, the communicative functions used, and what method the children used to communicate. The characteristics of the interaction were summarized and compared and the relationship between feeding ability and other child factors and interaction patterns were explored. Results Results revealed that interactions were maternally dominated. Mothers produced most of the communicative behaviour during the mealtime and used more directive functions than their children. The severity of feeding impairment was related to child patterns of interaction, but not to maternal interaction patterns. Language delay was also related to interaction patterns. Conclusions The results of this study highlight the importance for professionals to consider mealtime interactions for children with cerebral palsy and their mothers as an integral part of feeding investigations and ongoing interventions, as feeding impairment does seem to have a bearing on aspects of interaction.     

Maternal mental health and childrearing context in the development of children at 6, 18 and 36 months: a Taiwan birth cohort pilot study

Background This study investigated a possible pathway of the childrearing context and maternal mental health at 6 months, and how these factors influence children's development at 6, 18 and 36 months. Methods Using random sampling, 2048 children and mothers were selected. The mother's health status was evaluated using the Taiwanese version of the 36‐Item Short Form Health Survey (SF‐36), and infant development was assessed using the high reliable Taiwan birth cohort study instrument. All data were collected using parental self‐report, and were analysed using multiple linear regression analysis and further pathway using structural equation modelling. Results This study showed that 12 factors effected children's development at 6 months, and some dissipated with growth. Of these, maternal education had an enduring effect on different domains of child development, and this effect intensified as the child grew older. Children who grew up in a family with more siblings would show a delay in language development at 6 months; they have a delay in motor and social development at 18 and 36 months. Additionally, maternal mental health effected the children's fine motor development at 6 months. However, this effect disappeared at 18 months, and influenced children's social development at 36 months. Conclusions This study demonstrated that the development of children at as young as 6 months is affected by various factors. These factors may dissipate, continue to influence child development up to 3 years of age, turn from being disadvantageous to beneficial, or affect different domains of child development. Also, parental self‐report instrument might be has its limitation and could be contributed by several confounding factors. Thus, continuous longitudinal follow‐up on changes in maternal conditions, family factors, and environmental factors is vital to understand how these early infantile factors affect each other and influence the developmental trajectories of children into early childhood.     

Support groups for sisters and brothers of children with intellectual and developmental disabilities

This prospective study aimed at shedding some light on the functioning of French support groups for brothers and sisters of children with disabilities. Semi-structured interviews were conducted with the sisters, brothers and parents of children with disabilities along with care professionals. Focus groups were carried out with healthcare professionals directly involved in sibling support groups. The overall results showed that such groups are appreciated and psychologically helpful. This study also identifies several limitations inherent to these groups and proposes a discussion addressing potential areas for improvement.     

指导家长参与和强化运动训练对脑瘫患儿粗大运动功能的疗效影响

[目的]探讨指导家长参与和强化训练量对提高脑性瘫痪(简称脑瘫)患儿粗大运动功能的影响. [方法]按家长是否自愿接受康复培训并参加强化运动治疗分组,研究期间资料完整病例98例,其中50例参加患儿为观察组,48例未参加患儿为对照组.两组均由康复医生和康复治疗师采用综合康复治疗,功能训练主要采用Bobath法、上田法等康复技术,功能训练1次/d,每次40 min.观察组同时指导家长参与进行家庭康复训练,每天于医院治疗间期功能训练3次,每次40 min,观察时间6个月.治疗前后根据粗大运动发育量表(Gross Motor Function Measure,GMFM)-88项进行评估.[结果]患儿入组时GMFM-88项总百分比两组间比较,差异无统计学意义(P>0.05);治疗6个月后,GM-FM-88项总百分比两组间比较,观察组比对照组提高,差异有统计学意义(P<0.01).[结论]指导家长参与和强化运动训练有利于脑瘫患儿粗大运动功能的康复,是应该推广的康复模式.