The disabled children are a special people; but we pay little attention to them. At the same time, we study the welfare of the disabled children very little. As many problems on the disabled children presented in fron...The disabled children are a special people; but we pay little attention to them. At the same time, we study the welfare of the disabled children very little. As many problems on the disabled children presented in front of people, their welfare are generally put forward. The proportion of the disabled children's welfare is relatively small in the social welfare system of china; paying attention to the disabled children's welfare of china; getting to know the present situation of the disabled children's welfare of china and establishing the disabled children's welfare pattern of china based the present situation of the disabled children's welfare of china will be good for the rescue of the disabled children of china. That can give them a hand to make them live in a good living environment. Improving and perfecting the system of the disabled children's welfare of china; safeguarding the rights and interest of the disabled children of china; forming a good social atmosphere; building a harmonious society and improve the level of civilization are the benefit of the new system.展开更多
The Regulation on the Education of Persons with Disabilities, which came into effect in 2017, stipulates for the first time disabled children’s right to individualized education, clarifies the subjects who determine ...The Regulation on the Education of Persons with Disabilities, which came into effect in 2017, stipulates for the first time disabled children’s right to individualized education, clarifies the subjects who determine and influence the individualized education that disabled children receive, and determines the procedures for disabled children to receive individualized education. However, compared to the subjects that determine disabled children’s right to individualized education and procedural provisions as stipulated in the U.S. laws such as the Individuals with Disabilities Education Act of 1990, the Regulation on the Education of Persons with Disabilities in China has some problems, including inadequate participation of disabled children and their parents and incomplete relief settlement mechanism. China should further improve the legal provisions relating to disabled children’s right to individualized education, and safeguard the right of participation and the right to relief of disabled children and their parents.展开更多
The estimate of dental caries among Chinese children at the microscale level using standard methodology remains unclear. In this study, we assessed and analyzed the disease burden of childhood dental caries in China b...The estimate of dental caries among Chinese children at the microscale level using standard methodology remains unclear. In this study, we assessed and analyzed the disease burden of childhood dental caries in China by extracting data from the Global Burden of Disease, Injuries, and Risk Factors Study 2016 (GBD 2016). In 2016, the number of cases, prevalence, years lived with disability (YLD), and age-standardized YLD rate of dental caries was 93.0 million, 43.0%, 32,200 person years, and 14.8 per 100,000, respectively. Across 33 provincial units, the disease burden was highest in Hubei (YLD rate 28.6 per 100,000), lowest in Macao (9.1 per 100,000), while geographical clustering was not observed. Compared with 1990, the prevalence in 2016 decreased from 46.8% to 43.0%, and the YLD rate decreased from 16.5 per 100,000 to 14.8 per 100,000. Given the slight decrease in dental caries burden, the prevalence and disease burden remained high among Chinese children. Strategies for addressing the spatial inequity of childhood dental caries require geographical targeting.展开更多
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
This study aimed to determine the association and predictive capacities of job satisfaction,workplace stress,work motivation,and self-esteem on state of mental health of caregivers of children with disabilities in Sou...This study aimed to determine the association and predictive capacities of job satisfaction,workplace stress,work motivation,and self-esteem on state of mental health of caregivers of children with disabilities in South-West Nigeria.The self-determination theory provided a theoretical framework for the study.A closed-ended paper-pencil questionnaire tagged‘Mental Healthiness Scale for Caregivers’was used for data collection from 241 care-givers of children with disabilities.Data collected was analyzed using descriptive of frequency count,simple per-centage and mean as well as inferential statistics involving Pearson product moment correlation and Binary Logistic Regression at 95%confidence interval.Findings revealed a significant but inverse association between self-esteem,workplace stress and mental health.Work motivation had a direct association with mental health while job satisfaction had no significant association with mental health of caregivers of children with disabilities.Caregivers(18–40 years)had the highest odds for mental health concerns.Lowered self-esteem and workplace stress increased mental health concerns while job satisfaction significantly predicted a higher likelihood for posi-tive state of mental health among caregivers of children with disabilities.展开更多
The test floor effects seen in standardised tests lead to a standardised score of 1 or less with a flat profile that hides a child’s individual strengths and needs. The Griffiths III community of practitioners reques...The test floor effects seen in standardised tests lead to a standardised score of 1 or less with a flat profile that hides a child’s individual strengths and needs. The Griffiths III community of practitioners requested advice on the reporting of children’s development below the floor of the test, so that individual strengths and needs can be described. This paper reports the third phase of research following an earlier Scoping Review and a wider literature review. To confirm quality control, Phase 3 was conducted in a retrospective manner using the same methodology as the earlier phases but in a reverse direction. Peer reviewer comments and key elements from the Scoping Review and keywords from the publications were tabulated. Data analysis included a change of perspective to that of the child and their individual rights with respect to the literature themes already described in Phase 2. These confirmed that there is little specific guidance in the literature, but that computational advances for homogeneous populations and especially disaggregated data offer some solutions. A greater balance between broad biopsychosocial models and standardised models of assessment should be sought by practitioners together with the use of disaggregated data to highlight issues that pertain to individual subsets of results. This will ensure that the child’s right for their individual strengths and needs to be described together with a plan for management, may be met.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
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 increase in chronic diseases in childhood highlights the need for a biopsychosocial approach to deal with the complexity of these health conditions. The International Classification of Functioning, Disability, and...The increase in chronic diseases in childhood highlights the need for a biopsychosocial approach to deal with the complexity of these health conditions. The International Classification of Functioning, Disability, and Health (ICF) results from the need to implement new explanatory evaluative and therapeutic models. Thus, the present systematic review aims to identify published studies on the use of the ICF in chronic childhood diseases. As a secondary objective, to map the themes that have already been studied in the area to support the discussion on the expansion of the use of this classification in health services. The systematic review followed the PRISMA protocol, and the model was the PICO acronym, where Population was children and adolescents with chronic diseases, Intervention/Exposure was evaluation based on ICF concepts, Comparator was any tool, instrument, or intervention, and outcome was direct or indirect use of the ICF. We selected eight articles, five of which used the ICF as a conceptual tool and three as a classification system, divided into the following themes: quality of life, evaluation of patients (without using coding) and mapping the inclusion of the activity’s results and participation in clinical trials. Thus, use of the ICF in clinical practice is still incipient, although it has been recommended in guidelines. Further studies are necessary to expand the number of contributions by the ICF and to develop the necessary approaches for understanding the classification’s use.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
The culture of inclusion needs to be continuously promoted,supported,strengthened and tested to remove the barriers and deficiencies still present in the built environment around us.Do the play areas in parks,gardens ...The culture of inclusion needs to be continuously promoted,supported,strengthened and tested to remove the barriers and deficiencies still present in the built environment around us.Do the play areas in parks,gardens and squares offer real opportunities for persons with different abilities to play and have fun?Do they promote the principle of integration and create opportunities for inclusion?To answer these questions,an audit tool has been developed to assess the inclusivity of outdoor play areas in the central and suburban areas of our cities.The key elements of the evaluation focus on the physical environment of the playground and are grouped in three thematic areas:physical and sense-perception accessibility;accessibility to the experience and participation and socialisation.Although children’s right to play is now recognised and there is much talk of inclusion,application of the tool to an Italian city has shown that the right to play is not fully and satisfactorily applied.Inclusive playgrounds are still not frequent enough and a new approach to their design is needed.展开更多
The issue of education for people with disabilities has become of increasing concern. How can we effectively guarantee the basic right to education for persons with disabilities? Will the revised Regulation on Educati...The issue of education for people with disabilities has become of increasing concern. How can we effectively guarantee the basic right to education for persons with disabilities? Will the revised Regulation on Education for Persons with Disabilities meet their needs? This article takes the Regulation on Education for Persons with Disabilities as the core and compares it with the related special educational laws of the United States, Britain and Japan. The following conclusions were drawn from this study: In terms of educational concept, the three countries follow the concept of inclusive education, and pursue equity and educational justice. They not only pay attention to inclusive education but also focus on improving the quality of education for students with disabilities. All three countries focus on accommodating children with special needs, but each implements its programs in a different way. These practices can be used as reference for the development of a special needs education law in China.展开更多
Children with disabilities are often excluded from disaster risk reduction (DRR) initiatives and, as a result, can experience amplified physical, psychological, and educational vulnerabilities. Research on children wi...Children with disabilities are often excluded from disaster risk reduction (DRR) initiatives and, as a result, can experience amplified physical, psychological, and educational vulnerabilities. Research on children with disabilities during disasters is lacking, and their potential value in helping shape inclusive policies in DRR planning has been largely overlooked by both researchers and policymakers. This article highlights the existing research and knowledge gap. The review includes literature from two areas of scholarship in relation to disasters—children, and people with disabilities—and provides a critique of the prevailing medical, economic, and social discourses that conceptualize disability and associated implications for DRR. The article analyzes the different models in which disability has been conceptualized, and the role this has played in the inclusion or exclusion of children with disabilities in DRR activities and in determining access to necessary resources in the face of disaster. Finally, the study explores possible pathways to studying the contribution and involvement of children with disabilities in DRR.展开更多
Due to obstacles in expression and communication, as well as a societal lack of humanitarian spirit and deficiencies in system design, children with intellectual disabilities are confronted with various problems when ...Due to obstacles in expression and communication, as well as a societal lack of humanitarian spirit and deficiencies in system design, children with intellectual disabilities are confronted with various problems when seeking medical treatment. The dilemma of medical treatment seriously restricts the survival and development of disabled groups. By reviewing the way in which a mother accompanied her disabled child for 28 years together, this article analyzed the reasons for the dilemmas of medical treatment, and appealed to improve the living conditions of persons with intellectual disabilities to guarantee their rights for rehabilitation. In addition, by introducing the recreational and sports activities that parents' spontaneous organization created for children with intellectual disabilities, it put forward the proposal to prevent in advance the possible deterioration of conditions caused by social isolation, which is definitely a preferable remedy for persons with disabilities.展开更多
Obtaining effective rehabilitation and gaining access to full development services are fundamental for children with disabilities to fully participate in society and achieve social inclusion. A disabled child's right...Obtaining effective rehabilitation and gaining access to full development services are fundamental for children with disabilities to fully participate in society and achieve social inclusion. A disabled child's right to rehabilitation is specially protected by law in China and internationally. Chinese law specifically provides that the State shall ensure the enjoyment of the right of children with disabilities to rehabilitation services. This study shows that in the last five years, the rehabilitation services for children with disabilities are generally improved. But due to the incomplete protection mechanism, the right of children with disabilities to rehabilitation still could not be fully realized. This article concludes that the rehabilitation situation of children with disabilities in China presents the general feature of lacking of opportunities and structural imbalance. The Chinese government should take more responsibility to improve the rehabilitation system for children with disabilities. Specifically, the Chinese government should undertake the obligations as stated in the Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities to provide rehabilitation services for all children with disabilities. To ensure the effective implementation of the right of children with different disabilities in different areas, China shall improve the rehabilitation legal system, establish an urban-rural integral rehabilitation system, enlarge financial invest and increase professional level of rehabilitation staff.展开更多
文摘The disabled children are a special people; but we pay little attention to them. At the same time, we study the welfare of the disabled children very little. As many problems on the disabled children presented in front of people, their welfare are generally put forward. The proportion of the disabled children's welfare is relatively small in the social welfare system of china; paying attention to the disabled children's welfare of china; getting to know the present situation of the disabled children's welfare of china and establishing the disabled children's welfare pattern of china based the present situation of the disabled children's welfare of china will be good for the rescue of the disabled children of china. That can give them a hand to make them live in a good living environment. Improving and perfecting the system of the disabled children's welfare of china; safeguarding the rights and interest of the disabled children of china; forming a good social atmosphere; building a harmonious society and improve the level of civilization are the benefit of the new system.
基金the phased achievement for the project of the Jilin University’s Fundamental Research Funds "Research on International Human Rights Law:Taking the International Human Rights Political Theory and Practices as Reference"(2011QY024)the phased result of a major project of the Humanities and Science Key Research Base of Ministry of Education"Theoretical and Practical Research on the Establishment of the Government by Law in the Contexts of Rights"
文摘The Regulation on the Education of Persons with Disabilities, which came into effect in 2017, stipulates for the first time disabled children’s right to individualized education, clarifies the subjects who determine and influence the individualized education that disabled children receive, and determines the procedures for disabled children to receive individualized education. However, compared to the subjects that determine disabled children’s right to individualized education and procedural provisions as stipulated in the U.S. laws such as the Individuals with Disabilities Education Act of 1990, the Regulation on the Education of Persons with Disabilities in China has some problems, including inadequate participation of disabled children and their parents and incomplete relief settlement mechanism. China should further improve the legal provisions relating to disabled children’s right to individualized education, and safeguard the right of participation and the right to relief of disabled children and their parents.
文摘The estimate of dental caries among Chinese children at the microscale level using standard methodology remains unclear. In this study, we assessed and analyzed the disease burden of childhood dental caries in China by extracting data from the Global Burden of Disease, Injuries, and Risk Factors Study 2016 (GBD 2016). In 2016, the number of cases, prevalence, years lived with disability (YLD), and age-standardized YLD rate of dental caries was 93.0 million, 43.0%, 32,200 person years, and 14.8 per 100,000, respectively. Across 33 provincial units, the disease burden was highest in Hubei (YLD rate 28.6 per 100,000), lowest in Macao (9.1 per 100,000), while geographical clustering was not observed. Compared with 1990, the prevalence in 2016 decreased from 46.8% to 43.0%, and the YLD rate decreased from 16.5 per 100,000 to 14.8 per 100,000. Given the slight decrease in dental caries burden, the prevalence and disease burden remained high among Chinese children. Strategies for addressing the spatial inequity of childhood dental caries require geographical targeting.
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This study aimed to determine the association and predictive capacities of job satisfaction,workplace stress,work motivation,and self-esteem on state of mental health of caregivers of children with disabilities in South-West Nigeria.The self-determination theory provided a theoretical framework for the study.A closed-ended paper-pencil questionnaire tagged‘Mental Healthiness Scale for Caregivers’was used for data collection from 241 care-givers of children with disabilities.Data collected was analyzed using descriptive of frequency count,simple per-centage and mean as well as inferential statistics involving Pearson product moment correlation and Binary Logistic Regression at 95%confidence interval.Findings revealed a significant but inverse association between self-esteem,workplace stress and mental health.Work motivation had a direct association with mental health while job satisfaction had no significant association with mental health of caregivers of children with disabilities.Caregivers(18–40 years)had the highest odds for mental health concerns.Lowered self-esteem and workplace stress increased mental health concerns while job satisfaction significantly predicted a higher likelihood for posi-tive state of mental health among caregivers of children with disabilities.
文摘The test floor effects seen in standardised tests lead to a standardised score of 1 or less with a flat profile that hides a child’s individual strengths and needs. The Griffiths III community of practitioners requested advice on the reporting of children’s development below the floor of the test, so that individual strengths and needs can be described. This paper reports the third phase of research following an earlier Scoping Review and a wider literature review. To confirm quality control, Phase 3 was conducted in a retrospective manner using the same methodology as the earlier phases but in a reverse direction. Peer reviewer comments and key elements from the Scoping Review and keywords from the publications were tabulated. Data analysis included a change of perspective to that of the child and their individual rights with respect to the literature themes already described in Phase 2. These confirmed that there is little specific guidance in the literature, but that computational advances for homogeneous populations and especially disaggregated data offer some solutions. A greater balance between broad biopsychosocial models and standardised models of assessment should be sought by practitioners together with the use of disaggregated data to highlight issues that pertain to individual subsets of results. This will ensure that the child’s right for their individual strengths and needs to be described together with a plan for management, may be met.
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.
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 increase in chronic diseases in childhood highlights the need for a biopsychosocial approach to deal with the complexity of these health conditions. The International Classification of Functioning, Disability, and Health (ICF) results from the need to implement new explanatory evaluative and therapeutic models. Thus, the present systematic review aims to identify published studies on the use of the ICF in chronic childhood diseases. As a secondary objective, to map the themes that have already been studied in the area to support the discussion on the expansion of the use of this classification in health services. The systematic review followed the PRISMA protocol, and the model was the PICO acronym, where Population was children and adolescents with chronic diseases, Intervention/Exposure was evaluation based on ICF concepts, Comparator was any tool, instrument, or intervention, and outcome was direct or indirect use of the ICF. We selected eight articles, five of which used the ICF as a conceptual tool and three as a classification system, divided into the following themes: quality of life, evaluation of patients (without using coding) and mapping the inclusion of the activity’s results and participation in clinical trials. Thus, use of the ICF in clinical practice is still incipient, although it has been recommended in guidelines. Further studies are necessary to expand the number of contributions by the ICF and to develop the necessary approaches for understanding the classification’s use.
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.
文摘The culture of inclusion needs to be continuously promoted,supported,strengthened and tested to remove the barriers and deficiencies still present in the built environment around us.Do the play areas in parks,gardens and squares offer real opportunities for persons with different abilities to play and have fun?Do they promote the principle of integration and create opportunities for inclusion?To answer these questions,an audit tool has been developed to assess the inclusivity of outdoor play areas in the central and suburban areas of our cities.The key elements of the evaluation focus on the physical environment of the playground and are grouped in three thematic areas:physical and sense-perception accessibility;accessibility to the experience and participation and socialisation.Although children’s right to play is now recognised and there is much talk of inclusion,application of the tool to an Italian city has shown that the right to play is not fully and satisfactorily applied.Inclusive playgrounds are still not frequent enough and a new approach to their design is needed.
文摘The issue of education for people with disabilities has become of increasing concern. How can we effectively guarantee the basic right to education for persons with disabilities? Will the revised Regulation on Education for Persons with Disabilities meet their needs? This article takes the Regulation on Education for Persons with Disabilities as the core and compares it with the related special educational laws of the United States, Britain and Japan. The following conclusions were drawn from this study: In terms of educational concept, the three countries follow the concept of inclusive education, and pursue equity and educational justice. They not only pay attention to inclusive education but also focus on improving the quality of education for students with disabilities. All three countries focus on accommodating children with special needs, but each implements its programs in a different way. These practices can be used as reference for the development of a special needs education law in China.
文摘Children with disabilities are often excluded from disaster risk reduction (DRR) initiatives and, as a result, can experience amplified physical, psychological, and educational vulnerabilities. Research on children with disabilities during disasters is lacking, and their potential value in helping shape inclusive policies in DRR planning has been largely overlooked by both researchers and policymakers. This article highlights the existing research and knowledge gap. The review includes literature from two areas of scholarship in relation to disasters—children, and people with disabilities—and provides a critique of the prevailing medical, economic, and social discourses that conceptualize disability and associated implications for DRR. The article analyzes the different models in which disability has been conceptualized, and the role this has played in the inclusion or exclusion of children with disabilities in DRR activities and in determining access to necessary resources in the face of disaster. Finally, the study explores possible pathways to studying the contribution and involvement of children with disabilities in DRR.
文摘Due to obstacles in expression and communication, as well as a societal lack of humanitarian spirit and deficiencies in system design, children with intellectual disabilities are confronted with various problems when seeking medical treatment. The dilemma of medical treatment seriously restricts the survival and development of disabled groups. By reviewing the way in which a mother accompanied her disabled child for 28 years together, this article analyzed the reasons for the dilemmas of medical treatment, and appealed to improve the living conditions of persons with intellectual disabilities to guarantee their rights for rehabilitation. In addition, by introducing the recreational and sports activities that parents' spontaneous organization created for children with intellectual disabilities, it put forward the proposal to prevent in advance the possible deterioration of conditions caused by social isolation, which is definitely a preferable remedy for persons with disabilities.
基金This article is funded by 江苏省高校首批中青年教师境外研修项目The First Young and Middle-Aged Teachers Study Abroad Project of Jiangsu Province)江苏省第四期“333”高层次人才工程资助项目[TheFourth Session of "333" High-Level Personnel Project of Jiangsu Province (BRA2015420)]江苏省高校“青蓝工程”项目(The "Cyan and Blue" Project of Higher Education of Jiangsu Province).
文摘Obtaining effective rehabilitation and gaining access to full development services are fundamental for children with disabilities to fully participate in society and achieve social inclusion. A disabled child's right to rehabilitation is specially protected by law in China and internationally. Chinese law specifically provides that the State shall ensure the enjoyment of the right of children with disabilities to rehabilitation services. This study shows that in the last five years, the rehabilitation services for children with disabilities are generally improved. But due to the incomplete protection mechanism, the right of children with disabilities to rehabilitation still could not be fully realized. This article concludes that the rehabilitation situation of children with disabilities in China presents the general feature of lacking of opportunities and structural imbalance. The Chinese government should take more responsibility to improve the rehabilitation system for children with disabilities. Specifically, the Chinese government should undertake the obligations as stated in the Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities to provide rehabilitation services for all children with disabilities. To ensure the effective implementation of the right of children with different disabilities in different areas, China shall improve the rehabilitation legal system, establish an urban-rural integral rehabilitation system, enlarge financial invest and increase professional level of rehabilitation staff.