Objective To examine the resilience of parents of children with congenital heart disease and to investigate socio-demographic factors that may influence parents’resilience.Methods This is a web-based survey study usi...Objective To examine the resilience of parents of children with congenital heart disease and to investigate socio-demographic factors that may influence parents’resilience.Methods This is a web-based survey study using a cross-sectional design.A purposive sampling method was utilized to recruit 515 parents who care for children with congenital heart disease.Resilience was assessed using the Dispositional Resilience Scale-Ⅱ.Based on expert-interviews,a questionnaire was designed to collect socio-demographic data.Descriptive statistics,factor analysis,and linear regressions were used to analyze data.Results A total of 413 parents completed the survey study.The mean resilience score was 3.75(SD=0.61;range=1.89–4.89)with higher scores indicating higher resilience.The linear regression models demonstrated that parents who had lower education levels and lower gross household income had lower resilience(P<0.05).Conclusions Parents reported resilience that reflected their ability to cope with stressful events and mitigate stressors associated with having and caring for children with congenital heart disease.Lower education levels and lower gross household income are associated with lower resilience.To increase parents’resilience,nursing practice and nurse-led interventions should target screening and providing support for parents at-risk for lower resilience.As lower education level and financial hardship are factors that are difficult to modify through personal efforts,charitable foundations,federal and state governments should consider programs that would provide financial and health literacy support for parents at-risk for lower resilience.展开更多
Congenital heart disease （CHD） is the leading cause of birth defects, and its etiology is not completely understood. Atrial septal defect （ASD） is one of the most common defects of CHD. Previous studies have demon...Congenital heart disease （CHD） is the leading cause of birth defects, and its etiology is not completely understood. Atrial septal defect （ASD） is one of the most common defects of CHD. Previous studies have demonstrated that mutations in the transcription factor T-box 20 （TBX20） contribute to congenital ASD. Whole-exome sequencing in combination with a CHD-related gene filter was used to detect a family of three generations with ASD. A novel TBX20 mutation, c.526G〉A （p.D176N）, was identified and co-segregated in all affected members in this family. This mutation was predicted to be deleterious by bioinformatics programs （SIFT, Polyphen2, and MutationTaster）. This mutation was also not presented in the current Single Nucleotide Polymorphism Database （dbSNP） or National Heart, Lung, and Blood Institute （NHLBI） Exome Sequencing Project （ESP）. In conclusion, our finding expands the spectrum of TBX20 mutations and provides additional support that TBX20 plays important roles in cardiac development. Our study also provided a new and cost-effective analysis strategy for the genetic study in small CHD pedigree.展开更多
基金Sigma Theta Tau Chi Chapter,American Association of Nurse Practitioners,and Ethan M.Lindberg Foundation.
文摘Objective To examine the resilience of parents of children with congenital heart disease and to investigate socio-demographic factors that may influence parents’resilience.Methods This is a web-based survey study using a cross-sectional design.A purposive sampling method was utilized to recruit 515 parents who care for children with congenital heart disease.Resilience was assessed using the Dispositional Resilience Scale-Ⅱ.Based on expert-interviews,a questionnaire was designed to collect socio-demographic data.Descriptive statistics,factor analysis,and linear regressions were used to analyze data.Results A total of 413 parents completed the survey study.The mean resilience score was 3.75(SD=0.61;range=1.89–4.89)with higher scores indicating higher resilience.The linear regression models demonstrated that parents who had lower education levels and lower gross household income had lower resilience(P<0.05).Conclusions Parents reported resilience that reflected their ability to cope with stressful events and mitigate stressors associated with having and caring for children with congenital heart disease.Lower education levels and lower gross household income are associated with lower resilience.To increase parents’resilience,nursing practice and nurse-led interventions should target screening and providing support for parents at-risk for lower resilience.As lower education level and financial hardship are factors that are difficult to modify through personal efforts,charitable foundations,federal and state governments should consider programs that would provide financial and health literacy support for parents at-risk for lower resilience.
基金Project supported by the National Natural Science Foundation of China （Nos. 81370204, 81300072, and 81101475） Electronic supplementary materials： The online version of this article （htlp：//dx.doi.org/10.1631/jzus.B1400062） contains supplementary materials, which are available to authorized users
文摘Congenital heart disease （CHD） is the leading cause of birth defects, and its etiology is not completely understood. Atrial septal defect （ASD） is one of the most common defects of CHD. Previous studies have demonstrated that mutations in the transcription factor T-box 20 （TBX20） contribute to congenital ASD. Whole-exome sequencing in combination with a CHD-related gene filter was used to detect a family of three generations with ASD. A novel TBX20 mutation, c.526G〉A （p.D176N）, was identified and co-segregated in all affected members in this family. This mutation was predicted to be deleterious by bioinformatics programs （SIFT, Polyphen2, and MutationTaster）. This mutation was also not presented in the current Single Nucleotide Polymorphism Database （dbSNP） or National Heart, Lung, and Blood Institute （NHLBI） Exome Sequencing Project （ESP）. In conclusion, our finding expands the spectrum of TBX20 mutations and provides additional support that TBX20 plays important roles in cardiac development. Our study also provided a new and cost-effective analysis strategy for the genetic study in small CHD pedigree.
