BACKGROUND Parents of children with disabilities often have difficulty understanding their child’s behavior and are unable to do it appropriately because they do not know what to do.The more we properly understand ch...BACKGROUND Parents of children with disabilities often have difficulty understanding their child’s behavior and are unable to do it appropriately because they do not know what to do.The more we properly understand children with disabilities,the more positive the importance of parent education becomes in various aspects.AIM To demonstrate the effectiveness of parent education for children with disabilities in various aspects and present it as evidence that can be used clinically.METHODS For a meta-analysis on the effectiveness of parent education for children with disabilities,literature was collected from 2002 to 2022 using PubMed,Embase,Web of Science,Directory of Open Access Journals,and Europe PMC.Search terms were“disabled children,”“disabled children,”“parent education,”“parent training,”and“parent coaching.”The final searched literature included a total of 11 articles.To calculate the effect size,the mean,standard deviation,and sample size of the experimental and control groups were analyzed,and a meta-analysis was performed using RevMan version 5.4.1.To analyze statistical heterogeneity,a chi-square test was performed to evaluate the significance of Q statistics to indicate statistical heterogeneity.RESULTS The final literature totaled 11 articles,and a total of 4 items were analyzed.There were 5 studies on parental depression,the heterogeneity was 98%,and the effect size for parental depression was 0.35[confidence interval(CI:0.30-0.40)],indicating a small but statistically significant effect size.There were 4 studies on parenting attitude,the heterogeneity was 100%,the effect size on parenting attitude was 0.41(CI:0.37-0.46),which was a medium effect size,and the P value showed a statistically significant score.Additionally,face-to-face parent education was found to have a larger effect size than non-face-to-face education.Regarding parent education methods,face-to-face parent education had a medium effect size[0.57(CI:0.52-0.61)],while non-face-to-face parent education had a small effect size[0.23(CI:0.18-0.28)].CONCLUSION Parental education has shown high effectiveness in child development,and it has proven to be even more effective when face-to-face parenting education is conducted.Accordingly,more effective and objective data was presented.Based on this study,it is believed that parent education research applying various diagnostic groups should continue to be conducted.展开更多
Background: “Children with severe motor and intellectual disabilities” refers to children with markedly limited activity due to severe overlapping of physical and intellectual disabilities. The physical and mental b...Background: “Children with severe motor and intellectual disabilities” refers to children with markedly limited activity due to severe overlapping of physical and intellectual disabilities. The physical and mental burden placed on families raising severely disabled children, particularly the primary caregivers, is great in home settings. For families to effectively utilize services and over-come child rearing problems, the families themselves need the “strength” to cooperate with others for the purpose of raising a severely disabled child. The ultimate goal of family support is to enable such families to achieve satisfaction and self-growth in child rearing. Methods: We used a questionnaire to survey 75 primary caregivers to empirically elucidate the empowerment and positive feelings towards child rearing of families raising children with severe motor and intellectual disabilities and the related factors. The t-test and Spearman’s rank correlation coefficient were used to examine the association with bivariates. A multiple regression analysis was conducted for empowerment and positive feelings. Results: Results revealed that life events, livelihood, awareness of social support and the child’s sleep problems were factors related to empowerment. Of these, awareness of social support from outside of the family was found to contribute the most to empowerment. Furthermore, improvement and maintenance of positive feelings towards child rearing reaffirmed the existence of empowerment in addition to reducing negative feelings towards child rearing and ensuring social support. Conclusions: Raising children with severe motor and intellectual disabilities requires specialist knowledge and skills. Support from professionals to empower the entire family is therefore important in order to strengthen positive feelings towards child rearing.展开更多
In Japan, it is common practice to involve grandparents in the care of children with severe motor and intellectual disabilities (SMID), as it may be difficult for nuclear families to handle such children by themselves...In Japan, it is common practice to involve grandparents in the care of children with severe motor and intellectual disabilities (SMID), as it may be difficult for nuclear families to handle such children by themselves. This study aimed to explore and describe the process through which the grandparents of children with SMID may be involved in their upbringing. Data were obtained via semi-structured interviews with 13 grandparents who had a grandchild with SMID. The collected data were examined using Yasuhito Kinoshita’s modified grounded theory approach. Altogether, 11 categories were identified from 29 themes. The results revealed two broad patterns concerning the nature of the grandparents’ involvement and their definition of grandparenthood in the context of raising a grandchild with SMID. In one process, grandparents supported the child’s family. They also learned to relate to the child and their family, despite experiencing a lack of responsiveness from the child initially. This ultimately resulted in them being inspired by their grandchild. In the other process, the grandparents left the care of their grandchild to the child’s family and chose to monitor the child’s welfare indirectly. In both the processes, the level of involvement was determined by the extent to which the family chose to ask grandparents for help. The study’s findings can be used to identify the kind of support that grandparents of children with SMID require while highlighting the role of considering the needs and intentions of the children’s families.展开更多
Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these chi...Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted;QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.展开更多
This paper aims to verify the family support situation for primary school children with intellectual disabilities learning in regular class and to explore various educational strategies to promote their development.A ...This paper aims to verify the family support situation for primary school children with intellectual disabilities learning in regular class and to explore various educational strategies to promote their development.A self-made questionnaire was used in this survey,and the parents of 380 intellectual disabled students were the subjects of this survey.It turns out that the overall family support for intellectual disabled children learning in regular class in China is good,but it is affected by the degree of obstacles.Factors such as grade,gender,and parental education had no significant effect on family support.It is the shared responsibility of the government,schools,and parents to promote the level of family support.Governments at all levels must implement family support projects,schools must carry out family education guidance to impart scientific parenting knowledge,and parents must take note of their own responsibilities,so as to promote the physical and mental development of children with intellectual disabilities.展开更多
Objectives:Family caregivers raising children with severe motor and intellectual disabilities(SMID)experience the enormous burden of care.The concept of family empowerment is one of the important assessment indexes of...Objectives:Family caregivers raising children with severe motor and intellectual disabilities(SMID)experience the enormous burden of care.The concept of family empowerment is one of the important assessment indexes of family nursing from the perspective of providing comprehensive support for these families.The objective of this study was to identify the factors associated with the empowerment of families raising a child with SMID in Japan.Methods:We conducted a nationwide questionnaire survey involving 1659 primary caregivers raising a child with SMID through 89 special schools.We assessed the main outcomes using the Family Empowerment Scale(FES).We then conducted a multiple linear regression analysis to reveal the factors associated with family empowerment.Results:In total,1362 primary caregivers were included in our study.Our results show that factors contributing to high FES scores are higher age of the primary caregiver,higher education,greater recognition of regional support,lower childcare burden,higher utilization of home visit services,higher usage of a childcare institution,higher household income,and stronger family bonding.Conclusion:Healthcare professionals should carefully assess the state of family empowerment of the primary caregivers who are younger and those who have low education,low household income,high childcare burden,and fragile bonding with the family.Second,they should encourage such families to use regional support resources for childcare.That is,policy makers should consider ways to promote home visits and institutional services for the care of children with SMID,aiming especially for the provision of well-coordinated care and services.展开更多
The number of children with Severe Motor and Intellectual Disabilities (SMID) receiving medical treatment/recovering at home is rising yearly. Although benefits of this care are emphasized, the stress and duties of fa...The number of children with Severe Motor and Intellectual Disabilities (SMID) receiving medical treatment/recovering at home is rising yearly. Although benefits of this care are emphasized, the stress and duties of family members in the household are extremely great, especially because Japan is becoming a society of nuclear families. In this study, we described the lifestyles of nuclear families providing in-home medical care for children with SMID, focusing on family members’ roles. Roles of mothers, fathers, and siblings of children with SMID were summarized from semi-structured inter-views. As a result, for “the roles of each family member living with a child with SMID”, mothers had five roles, fathers seven, and siblings five. For “the hopes of each family member living with a child with SMID”, parents desired the whole family collaboration in care for children with SMID, and as caregivers, parents’ common thoughts included wanting siblings in order to help care for the child with SMID and wanting siblings to treasure their own lives. Siblings wanted their mother to have some time for rest and expected their fathers to have two main roles. They also expected their grandparents and other siblings to fulfill roles.展开更多
Social skills include the ability to establish interpersonal relationships with others in a way that is acceptable in terms of norms of society and it should be beneficial to society and have mutual interest. Method: ...Social skills include the ability to establish interpersonal relationships with others in a way that is acceptable in terms of norms of society and it should be beneficial to society and have mutual interest. Method: Sample was taken from especial elementary school for educable intellectual disability children in Mashhad, Iran. The sample was boys between 9 - 11 years. After the initial selection of students, they were randomly assigned to two groups of twenty (experimental and control groups). 7 sessions of music therapy were performed for each one in the experimental group whereas no sessions were applied for anyone in the control group. Winelend Social Growth Scale was used to measure their social skill before and after intervention. Result: The mean difference in social skill between the two groups were statistically less than the 0.01 which is highly significant (P-value = 0.0005). This shows that art and music therapy are effective on the growth of social skills in educable intellectual disability children. Conclusion: This research shows that music therapy is effective for improvement of social skills in educable intellectual disability children.展开更多
BACKGROUND Burden due to intellectual disability(ID) is only third to the depressive disorders and anxiety disorders in India. This national burden significantly contributes to the global burden of ID and hence one ha...BACKGROUND Burden due to intellectual disability(ID) is only third to the depressive disorders and anxiety disorders in India. This national burden significantly contributes to the global burden of ID and hence one has to think globally and act locally to reduce this burden. At its best the collective prevalence of ID is in the form of narrative reviews. There is an urgent need to document the summary prevalence of ID to enhance further policymaking, national programs and resource allocation.AIM To establish the summary prevalence of ID during the past 60 years in India.METHODS Two researchers independently and electronically searched Pub Med, Scopus, and the Cochrane library from January 1961 to December 2020 using appropriate search terms. Two other investigators extracted the study design, setting, participant characteristics, and measures used to identify ID. Two other researchers appraised the quality of the studies using the Joanna Briggs Institute critical appraisal format for Prevalence Studies. Funnel plot and Egger’s regression test were used to ascertain the publication and small study effect on the prevalence. To evaluate the summary prevalence of ID, we used the random effects model with arcsine square-root transformation. Heterogeneity of I^(2)≥ 50% was considered substantial and we determined the heterogeneity with meta-regression. The analyses were performed using STATA(version 16).RESULTS Nineteen studies were included in the meta-analysis. There was publication bias;the trim-and-fill method was used to further ascertain bias. Concerns with control of confounders and the reliable measure of outcome were noted in the critical appraisal. The summary prevalence of ID was 2% [(95%CI: 2%, 3%);I^(2)= 98%] and the adjusted summary prevalence was 1.4%. Meta-regression demonstrated that age of the participants was statistically significantly related to the prevalence;other factors did not influence the prevalence or heterogeneity.CONCLUSION The summary prevalence of ID in India was established to be 2% taking into consideration the individual prevalence studies over the last six decades. This knowledge should improve the existing disability and mental health policies, national programs and service delivery to reduce the national and global burden associated with ID.展开更多
目的系统综述数字赋能技术(DET)促进智力与发展性残疾(IDD)儿童身体活动和健康的效益。方法从PubMed、Embase、Web of Science、PsycINFO和中国知网中,检索2014年至2023年DET在IDD儿童身体活动中的应用相关文献,对文献进行质量评价,对...目的系统综述数字赋能技术(DET)促进智力与发展性残疾(IDD)儿童身体活动和健康的效益。方法从PubMed、Embase、Web of Science、PsycINFO和中国知网中,检索2014年至2023年DET在IDD儿童身体活动中的应用相关文献,对文献进行质量评价,对高质量随机对照研究(RCT)进行系统综述。结果最终纳入8项RCT,来自中国、美国、意大利、韩国4个国家,涉及376例儿童,主要来源于智力残疾应用、发展性残疾研究、临床医学等领域期刊。发表时间主要集中在2018年至2023年。研究对象年龄7~18岁,涵盖智力残疾(包括唐氏综合征)、孤独症和其他发展性残疾。采用的技术包括可穿戴技术、移动健康指导和监测的云计算技术、虚拟现实和增强现实,以及动感游戏技术,设备包括主动视频游戏、Fitbit智能设备、Wii Fit平衡游戏、Stepmania节奏视频游戏、Xbox Kinect系统、VZFit传感器和CoTras认知康复电脑游戏等,虚拟身体活动包括拳击、田径、保龄球、乒乓球、沙滩排球、足球、棒球、滑雪、网球、高尔夫、飞镖、美式足球、射击、跳跃、慢跑和跳绳等。干预频率为每次20~45 min,每周1~5次,持续4~12周;在家庭、特殊教育学校和康复机构中进行。健康效益主要体现在提高身体活动水平、改善身体功能,以及提高运动功能和日常生活活动能力。结论将DET应用到身体活动领域,能提高IDD儿童在虚拟环境下、学校、社区以及康复机构中的身体活动参与水平,改善上下肢活动功能、粗大运动功能和肌肉力量,提高静态平衡功能、运动协调和感觉运动功能,减少久坐行为发生,提升认知、日常生活活动能力和社交能力。展开更多
目的系统评估言语与语言康复和教育干预对智力与发展性残疾(IDD)儿童的效果。方法检索PubMed、PsycINFO、ERIC、Cochrane Library、Web of Science数据库相关文献进行系统综述,检索时限为2018年1月至2024年5月。结果最终纳入8篇英文文献...目的系统评估言语与语言康复和教育干预对智力与发展性残疾(IDD)儿童的效果。方法检索PubMed、PsycINFO、ERIC、Cochrane Library、Web of Science数据库相关文献进行系统综述,检索时限为2018年1月至2024年5月。结果最终纳入8篇英文文献,来自美国、法国、意大利、挪威、波兰、新西兰6个国家,涉及610例IDD儿童,来源于言语语言病理学、唐氏综合征研究、言语语言听力研究等期刊。发表时间主要集中在2018年至2023年。研究对象年龄2~12岁,主要健康状况包括智力发育迟缓、孤独症、唐氏综合征。干预类型包括传统言语治疗(个体化治疗和小组治疗)、增强与替代沟通(设备辅助和手语及图卡)、家庭参与的语言训练计划(家长培训和家庭互动)、计算机辅助语言学习(语言学习软件和远程健康)、基于游戏的干预(互动游戏和结构化游戏)。每次15~150 min,每周1~10次,持续10~144周。康复结局体现在5个方面:增加口语表达中的词汇量;改善语言理解、符号识别和词汇理解能力;表达性语言和接受性语言能力提高;参与的游戏多样性和游戏参与水平改善,沟通率、社会交往和互动能力提高;整体语言和非语言交流能力提高。结论结合个体化治疗、家庭参与、技术辅助和互动游戏等多种方法的康复干预,对IDD儿童口语生成、语言理解、言语生成、社会交往和交流能力等方面有显著效果。展开更多
目的:探讨残疾儿童青少年身体活动行为的家庭影响因素。方法:在中国知网、Web of Science、SPORTDiscus、PsycINFO、Embase、PubMed和Scopus数据库中检索截至2023年6月30日的定量、定性及混合设计文献,采用聚敛整合法和半定量分析法对...目的:探讨残疾儿童青少年身体活动行为的家庭影响因素。方法:在中国知网、Web of Science、SPORTDiscus、PsycINFO、Embase、PubMed和Scopus数据库中检索截至2023年6月30日的定量、定性及混合设计文献,采用聚敛整合法和半定量分析法对相关文献进行整合分析。结果:研究共纳入56篇文献,涉及样本量4152人。确定了4类一级家庭影响因素,即家庭社会人口学特征、家庭环境、父母支持和父母心理特征,共涉及29个二级家庭影响因素。多种家庭因素对残疾儿童青少年的身体活动行为产生显著影响。例如,家庭经济收入、家庭成员参与度及父母的身体活动行为与残疾儿童青少年身体活动呈正相关;家庭结构(单亲)、父母的安全顾虑及父母压力与残疾儿童青少年身体活动呈负相关。结论:父母支持和父母心理特征2类因素与残疾儿童青少年的身体活动存在较为一致的关系,未来的实践干预和政策制定应予以充分考虑。此外,仍需开展更多高质量研究对家庭因素做进一步检验。展开更多
目的系统综述有关音乐干预对智力与发展性残疾(IDD)儿童青少年功能、健康和发展的积极影响的系统综述中的相关证据。方法检索PubMed、EBSCO、PsycINFO、Embase、Web of Science和中国知网2014年1月至2024年3月公开发表的有关IDD儿童青...目的系统综述有关音乐干预对智力与发展性残疾(IDD)儿童青少年功能、健康和发展的积极影响的系统综述中的相关证据。方法检索PubMed、EBSCO、PsycINFO、Embase、Web of Science和中国知网2014年1月至2024年3月公开发表的有关IDD儿童青少年音乐干预(包括治疗和音乐教育)的功能、健康和发展效益的高质量的系统综述,并分析其证据。结果最终纳入8篇英文系统综述,涉及5308例IDD儿童青少年,来自中国、法国、西班牙、加拿大、美国、英国6个国家。纳入文献主要来源于音乐治疗、儿童青少年精神病学、教育心理学、智力残疾、孤独症谱系障碍(ASD)、健康心理学等领域期刊,发表时间主要集中在2018年至2023年。音乐治疗干预类型主要有音乐教育干预、即兴音乐疗法(创作和表现)、互动音乐疗法(音乐与运动)、混合音乐疗法(包括唱歌,跳舞和戏剧)、听觉运动映射训练、家庭音乐疗法以及基于旋律的交流疗法;包括基础乐理学习、音乐手势和语言训练、音乐欣赏、即兴演奏、音乐合奏、音乐合作游戏等,每次10~90 min,每周1~5次,持续1~32周。在认知发展方面,音乐教育干预有益于IDD儿童青少年注意力的改善。在心理语言技能方面,音乐治疗能够显著改善ASD儿童青少年的发音能力和言语能力,尤其是语音记忆、单词和句子理解能力,提升IDD儿童青少年的语言与沟通技能,并增强口头表达能力。音乐也有助于改善行为障碍,包括提升身体协调能力、减少重复行为、控制多动行为等。在音乐教育成绩方面,接受音乐疗法能提高IDD儿童青少年对歌曲节奏和旋律的熟悉度、音素的辨别能力,掌握歌曲和歌词,增强音乐节奏感知能力。音乐治疗还能促进社会和情感发展,改善亲社会行为和社交技能,有助于减轻焦虑,增强情绪控制能力,提高社交能力和自尊心,增加积极情绪,并加强与同伴和老师的交流合作。结论音乐干预对IDD儿童青少年的功能、健康和发展产生积极影响,体现在认知发展、心理语言技能、动作技能、音乐教育成绩以及儿童青少年的社会和情感发展等方面。展开更多
文摘BACKGROUND Parents of children with disabilities often have difficulty understanding their child’s behavior and are unable to do it appropriately because they do not know what to do.The more we properly understand children with disabilities,the more positive the importance of parent education becomes in various aspects.AIM To demonstrate the effectiveness of parent education for children with disabilities in various aspects and present it as evidence that can be used clinically.METHODS For a meta-analysis on the effectiveness of parent education for children with disabilities,literature was collected from 2002 to 2022 using PubMed,Embase,Web of Science,Directory of Open Access Journals,and Europe PMC.Search terms were“disabled children,”“disabled children,”“parent education,”“parent training,”and“parent coaching.”The final searched literature included a total of 11 articles.To calculate the effect size,the mean,standard deviation,and sample size of the experimental and control groups were analyzed,and a meta-analysis was performed using RevMan version 5.4.1.To analyze statistical heterogeneity,a chi-square test was performed to evaluate the significance of Q statistics to indicate statistical heterogeneity.RESULTS The final literature totaled 11 articles,and a total of 4 items were analyzed.There were 5 studies on parental depression,the heterogeneity was 98%,and the effect size for parental depression was 0.35[confidence interval(CI:0.30-0.40)],indicating a small but statistically significant effect size.There were 4 studies on parenting attitude,the heterogeneity was 100%,the effect size on parenting attitude was 0.41(CI:0.37-0.46),which was a medium effect size,and the P value showed a statistically significant score.Additionally,face-to-face parent education was found to have a larger effect size than non-face-to-face education.Regarding parent education methods,face-to-face parent education had a medium effect size[0.57(CI:0.52-0.61)],while non-face-to-face parent education had a small effect size[0.23(CI:0.18-0.28)].CONCLUSION Parental education has shown high effectiveness in child development,and it has proven to be even more effective when face-to-face parenting education is conducted.Accordingly,more effective and objective data was presented.Based on this study,it is believed that parent education research applying various diagnostic groups should continue to be conducted.
文摘Background: “Children with severe motor and intellectual disabilities” refers to children with markedly limited activity due to severe overlapping of physical and intellectual disabilities. The physical and mental burden placed on families raising severely disabled children, particularly the primary caregivers, is great in home settings. For families to effectively utilize services and over-come child rearing problems, the families themselves need the “strength” to cooperate with others for the purpose of raising a severely disabled child. The ultimate goal of family support is to enable such families to achieve satisfaction and self-growth in child rearing. Methods: We used a questionnaire to survey 75 primary caregivers to empirically elucidate the empowerment and positive feelings towards child rearing of families raising children with severe motor and intellectual disabilities and the related factors. The t-test and Spearman’s rank correlation coefficient were used to examine the association with bivariates. A multiple regression analysis was conducted for empowerment and positive feelings. Results: Results revealed that life events, livelihood, awareness of social support and the child’s sleep problems were factors related to empowerment. Of these, awareness of social support from outside of the family was found to contribute the most to empowerment. Furthermore, improvement and maintenance of positive feelings towards child rearing reaffirmed the existence of empowerment in addition to reducing negative feelings towards child rearing and ensuring social support. Conclusions: Raising children with severe motor and intellectual disabilities requires specialist knowledge and skills. Support from professionals to empower the entire family is therefore important in order to strengthen positive feelings towards child rearing.
文摘In Japan, it is common practice to involve grandparents in the care of children with severe motor and intellectual disabilities (SMID), as it may be difficult for nuclear families to handle such children by themselves. This study aimed to explore and describe the process through which the grandparents of children with SMID may be involved in their upbringing. Data were obtained via semi-structured interviews with 13 grandparents who had a grandchild with SMID. The collected data were examined using Yasuhito Kinoshita’s modified grounded theory approach. Altogether, 11 categories were identified from 29 themes. The results revealed two broad patterns concerning the nature of the grandparents’ involvement and their definition of grandparenthood in the context of raising a grandchild with SMID. In one process, grandparents supported the child’s family. They also learned to relate to the child and their family, despite experiencing a lack of responsiveness from the child initially. This ultimately resulted in them being inspired by their grandchild. In the other process, the grandparents left the care of their grandchild to the child’s family and chose to monitor the child’s welfare indirectly. In both the processes, the level of involvement was determined by the extent to which the family chose to ask grandparents for help. The study’s findings can be used to identify the kind of support that grandparents of children with SMID require while highlighting the role of considering the needs and intentions of the children’s families.
文摘Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted;QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.
基金supported by The Final Achievement of the 13th Five-Year Plan of Philosophy and Social Sciences in Guangdong Province in 2020“Research on the Relationship Between Family Support,School Support and School Adaptation of Regular Primary School Students(No.:GD20XJY27).
文摘This paper aims to verify the family support situation for primary school children with intellectual disabilities learning in regular class and to explore various educational strategies to promote their development.A self-made questionnaire was used in this survey,and the parents of 380 intellectual disabled students were the subjects of this survey.It turns out that the overall family support for intellectual disabled children learning in regular class in China is good,but it is affected by the degree of obstacles.Factors such as grade,gender,and parental education had no significant effect on family support.It is the shared responsibility of the government,schools,and parents to promote the level of family support.Governments at all levels must implement family support projects,schools must carry out family education guidance to impart scientific parenting knowledge,and parents must take note of their own responsibilities,so as to promote the physical and mental development of children with intellectual disabilities.
基金This study was funded by Grant-in-Aid for Scientific Research(15K15846 and 18H03093).
文摘Objectives:Family caregivers raising children with severe motor and intellectual disabilities(SMID)experience the enormous burden of care.The concept of family empowerment is one of the important assessment indexes of family nursing from the perspective of providing comprehensive support for these families.The objective of this study was to identify the factors associated with the empowerment of families raising a child with SMID in Japan.Methods:We conducted a nationwide questionnaire survey involving 1659 primary caregivers raising a child with SMID through 89 special schools.We assessed the main outcomes using the Family Empowerment Scale(FES).We then conducted a multiple linear regression analysis to reveal the factors associated with family empowerment.Results:In total,1362 primary caregivers were included in our study.Our results show that factors contributing to high FES scores are higher age of the primary caregiver,higher education,greater recognition of regional support,lower childcare burden,higher utilization of home visit services,higher usage of a childcare institution,higher household income,and stronger family bonding.Conclusion:Healthcare professionals should carefully assess the state of family empowerment of the primary caregivers who are younger and those who have low education,low household income,high childcare burden,and fragile bonding with the family.Second,they should encourage such families to use regional support resources for childcare.That is,policy makers should consider ways to promote home visits and institutional services for the care of children with SMID,aiming especially for the provision of well-coordinated care and services.
文摘The number of children with Severe Motor and Intellectual Disabilities (SMID) receiving medical treatment/recovering at home is rising yearly. Although benefits of this care are emphasized, the stress and duties of family members in the household are extremely great, especially because Japan is becoming a society of nuclear families. In this study, we described the lifestyles of nuclear families providing in-home medical care for children with SMID, focusing on family members’ roles. Roles of mothers, fathers, and siblings of children with SMID were summarized from semi-structured inter-views. As a result, for “the roles of each family member living with a child with SMID”, mothers had five roles, fathers seven, and siblings five. For “the hopes of each family member living with a child with SMID”, parents desired the whole family collaboration in care for children with SMID, and as caregivers, parents’ common thoughts included wanting siblings in order to help care for the child with SMID and wanting siblings to treasure their own lives. Siblings wanted their mother to have some time for rest and expected their fathers to have two main roles. They also expected their grandparents and other siblings to fulfill roles.
文摘Social skills include the ability to establish interpersonal relationships with others in a way that is acceptable in terms of norms of society and it should be beneficial to society and have mutual interest. Method: Sample was taken from especial elementary school for educable intellectual disability children in Mashhad, Iran. The sample was boys between 9 - 11 years. After the initial selection of students, they were randomly assigned to two groups of twenty (experimental and control groups). 7 sessions of music therapy were performed for each one in the experimental group whereas no sessions were applied for anyone in the control group. Winelend Social Growth Scale was used to measure their social skill before and after intervention. Result: The mean difference in social skill between the two groups were statistically less than the 0.01 which is highly significant (P-value = 0.0005). This shows that art and music therapy are effective on the growth of social skills in educable intellectual disability children. Conclusion: This research shows that music therapy is effective for improvement of social skills in educable intellectual disability children.
文摘BACKGROUND Burden due to intellectual disability(ID) is only third to the depressive disorders and anxiety disorders in India. This national burden significantly contributes to the global burden of ID and hence one has to think globally and act locally to reduce this burden. At its best the collective prevalence of ID is in the form of narrative reviews. There is an urgent need to document the summary prevalence of ID to enhance further policymaking, national programs and resource allocation.AIM To establish the summary prevalence of ID during the past 60 years in India.METHODS Two researchers independently and electronically searched Pub Med, Scopus, and the Cochrane library from January 1961 to December 2020 using appropriate search terms. Two other investigators extracted the study design, setting, participant characteristics, and measures used to identify ID. Two other researchers appraised the quality of the studies using the Joanna Briggs Institute critical appraisal format for Prevalence Studies. Funnel plot and Egger’s regression test were used to ascertain the publication and small study effect on the prevalence. To evaluate the summary prevalence of ID, we used the random effects model with arcsine square-root transformation. Heterogeneity of I^(2)≥ 50% was considered substantial and we determined the heterogeneity with meta-regression. The analyses were performed using STATA(version 16).RESULTS Nineteen studies were included in the meta-analysis. There was publication bias;the trim-and-fill method was used to further ascertain bias. Concerns with control of confounders and the reliable measure of outcome were noted in the critical appraisal. The summary prevalence of ID was 2% [(95%CI: 2%, 3%);I^(2)= 98%] and the adjusted summary prevalence was 1.4%. Meta-regression demonstrated that age of the participants was statistically significantly related to the prevalence;other factors did not influence the prevalence or heterogeneity.CONCLUSION The summary prevalence of ID in India was established to be 2% taking into consideration the individual prevalence studies over the last six decades. This knowledge should improve the existing disability and mental health policies, national programs and service delivery to reduce the national and global burden associated with ID.
文摘目的系统评估言语与语言康复和教育干预对智力与发展性残疾(IDD)儿童的效果。方法检索PubMed、PsycINFO、ERIC、Cochrane Library、Web of Science数据库相关文献进行系统综述,检索时限为2018年1月至2024年5月。结果最终纳入8篇英文文献,来自美国、法国、意大利、挪威、波兰、新西兰6个国家,涉及610例IDD儿童,来源于言语语言病理学、唐氏综合征研究、言语语言听力研究等期刊。发表时间主要集中在2018年至2023年。研究对象年龄2~12岁,主要健康状况包括智力发育迟缓、孤独症、唐氏综合征。干预类型包括传统言语治疗(个体化治疗和小组治疗)、增强与替代沟通(设备辅助和手语及图卡)、家庭参与的语言训练计划(家长培训和家庭互动)、计算机辅助语言学习(语言学习软件和远程健康)、基于游戏的干预(互动游戏和结构化游戏)。每次15~150 min,每周1~10次,持续10~144周。康复结局体现在5个方面:增加口语表达中的词汇量;改善语言理解、符号识别和词汇理解能力;表达性语言和接受性语言能力提高;参与的游戏多样性和游戏参与水平改善,沟通率、社会交往和互动能力提高;整体语言和非语言交流能力提高。结论结合个体化治疗、家庭参与、技术辅助和互动游戏等多种方法的康复干预,对IDD儿童口语生成、语言理解、言语生成、社会交往和交流能力等方面有显著效果。
文摘目的:探讨残疾儿童青少年身体活动行为的家庭影响因素。方法:在中国知网、Web of Science、SPORTDiscus、PsycINFO、Embase、PubMed和Scopus数据库中检索截至2023年6月30日的定量、定性及混合设计文献,采用聚敛整合法和半定量分析法对相关文献进行整合分析。结果:研究共纳入56篇文献,涉及样本量4152人。确定了4类一级家庭影响因素,即家庭社会人口学特征、家庭环境、父母支持和父母心理特征,共涉及29个二级家庭影响因素。多种家庭因素对残疾儿童青少年的身体活动行为产生显著影响。例如,家庭经济收入、家庭成员参与度及父母的身体活动行为与残疾儿童青少年身体活动呈正相关;家庭结构(单亲)、父母的安全顾虑及父母压力与残疾儿童青少年身体活动呈负相关。结论:父母支持和父母心理特征2类因素与残疾儿童青少年的身体活动存在较为一致的关系,未来的实践干预和政策制定应予以充分考虑。此外,仍需开展更多高质量研究对家庭因素做进一步检验。
文摘目的系统综述有关音乐干预对智力与发展性残疾(IDD)儿童青少年功能、健康和发展的积极影响的系统综述中的相关证据。方法检索PubMed、EBSCO、PsycINFO、Embase、Web of Science和中国知网2014年1月至2024年3月公开发表的有关IDD儿童青少年音乐干预(包括治疗和音乐教育)的功能、健康和发展效益的高质量的系统综述,并分析其证据。结果最终纳入8篇英文系统综述,涉及5308例IDD儿童青少年,来自中国、法国、西班牙、加拿大、美国、英国6个国家。纳入文献主要来源于音乐治疗、儿童青少年精神病学、教育心理学、智力残疾、孤独症谱系障碍(ASD)、健康心理学等领域期刊,发表时间主要集中在2018年至2023年。音乐治疗干预类型主要有音乐教育干预、即兴音乐疗法(创作和表现)、互动音乐疗法(音乐与运动)、混合音乐疗法(包括唱歌,跳舞和戏剧)、听觉运动映射训练、家庭音乐疗法以及基于旋律的交流疗法;包括基础乐理学习、音乐手势和语言训练、音乐欣赏、即兴演奏、音乐合奏、音乐合作游戏等,每次10~90 min,每周1~5次,持续1~32周。在认知发展方面,音乐教育干预有益于IDD儿童青少年注意力的改善。在心理语言技能方面,音乐治疗能够显著改善ASD儿童青少年的发音能力和言语能力,尤其是语音记忆、单词和句子理解能力,提升IDD儿童青少年的语言与沟通技能,并增强口头表达能力。音乐也有助于改善行为障碍,包括提升身体协调能力、减少重复行为、控制多动行为等。在音乐教育成绩方面,接受音乐疗法能提高IDD儿童青少年对歌曲节奏和旋律的熟悉度、音素的辨别能力,掌握歌曲和歌词,增强音乐节奏感知能力。音乐治疗还能促进社会和情感发展,改善亲社会行为和社交技能,有助于减轻焦虑,增强情绪控制能力,提高社交能力和自尊心,增加积极情绪,并加强与同伴和老师的交流合作。结论音乐干预对IDD儿童青少年的功能、健康和发展产生积极影响,体现在认知发展、心理语言技能、动作技能、音乐教育成绩以及儿童青少年的社会和情感发展等方面。