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
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
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.
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.
