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
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
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
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
目的:探析机能活动训练计划(the motor activity training program,MATP)于我国在地化实践的效果,挖掘现实问题并提出可持续发展的建议。方法:选取5位8~12岁中重度智力障碍学生,分别对其进行8周MATP训练课程和5天MATP展示课程的适应体...目的:探析机能活动训练计划(the motor activity training program,MATP)于我国在地化实践的效果,挖掘现实问题并提出可持续发展的建议。方法:选取5位8~12岁中重度智力障碍学生,分别对其进行8周MATP训练课程和5天MATP展示课程的适应体育干预。收集7位MATP训练师的课程总结,遵循扎根理论范式,通过质性分析工具Nvivo 11分析我国在地化MATP产生的效果。结果:1)形成训练师主观感受和运动员客观评价两个树状节点,并从MATP印象、MATP期望、参与MATP感受和MATP带来收获以及运动员筛选、运动员改变、运动员应激反应和MATP项目适用性8个子节点阐述在地化MATP的成效。2)发现在地化MATP效益判定工具模糊、倡导理念与实际训练有偏差以及可持续推广有难度等问题。结论:在地化MATP能够改善中重度智力障碍学生因身体缺陷而弱化的某些身体机能、情绪调节能力和社会适应能力。建议未来研究重视在地化MATP恰当的量化评估方法以探讨剂量效应,坚持MATP理念指导实践以及建立“共治-共建-共享”的保障模式。展开更多
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.
文摘目的:探析机能活动训练计划(the motor activity training program,MATP)于我国在地化实践的效果,挖掘现实问题并提出可持续发展的建议。方法:选取5位8~12岁中重度智力障碍学生,分别对其进行8周MATP训练课程和5天MATP展示课程的适应体育干预。收集7位MATP训练师的课程总结,遵循扎根理论范式,通过质性分析工具Nvivo 11分析我国在地化MATP产生的效果。结果:1)形成训练师主观感受和运动员客观评价两个树状节点,并从MATP印象、MATP期望、参与MATP感受和MATP带来收获以及运动员筛选、运动员改变、运动员应激反应和MATP项目适用性8个子节点阐述在地化MATP的成效。2)发现在地化MATP效益判定工具模糊、倡导理念与实际训练有偏差以及可持续推广有难度等问题。结论:在地化MATP能够改善中重度智力障碍学生因身体缺陷而弱化的某些身体机能、情绪调节能力和社会适应能力。建议未来研究重视在地化MATP恰当的量化评估方法以探讨剂量效应,坚持MATP理念指导实践以及建立“共治-共建-共享”的保障模式。
