Background:Parents of children with complex right ventricular outflow tract(RVOT)anomalies are confronted with their child’s need for heart surgery early in life and repeated reoperations later on.Preoperative assess...Background:Parents of children with complex right ventricular outflow tract(RVOT)anomalies are confronted with their child’s need for heart surgery early in life and repeated reoperations later on.Preoperative assessment needs to be performed whenever an indication for reoperation is suspected.The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies,in particular,how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reoperation.Method:Individual interviews(n=27)were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis.Results:The analysis resulted in the following five main coexisting themes:The heart surgery keeps my child alive illuminates parents’experiences during and after the assessment and emphasizes that heart surgery,although dreaded,is central for their child’s survival;Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition;the remaining three themes,Unconditional love,Trust in life,and Togetherness,illuminate the ways in which the parents gained inner strength and confidence in their everyday lives.Conclusion:Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused,they experienced several distressing situations during the assessment process that should be addressed.By inviting both the parents and their child to participate in the child’s care,individualized support can take into account the needs of both parents and child.展开更多
In this paper, media provides a means of thinking critically about the role of ADA regulations should play in parental fights for individuals with mental disabilities, specifically mental illness, developmental disabi...In this paper, media provides a means of thinking critically about the role of ADA regulations should play in parental fights for individuals with mental disabilities, specifically mental illness, developmental disabilities, and brain injuries. Congress passed the Americans with Disabilities Act more than 20 years ago to ensure the rights of individuals with disabilities, including parental rights. Title II of the ADA applies to decisions made in the courtroom and other governmental agencies, which include child custody cases and termination of parental rights. ＂Reasonable Accommodations＂ is one requirement of the ADA to make society more inclusive for individuals with disabilities, even in the realm of parenting. Under Title II, such modifications would include parenting classes, homecare assistance, support groups, community resources, and counseling. Through a critical examination of experiences as depicted through media and court case analyses of parents with mental disabilities, this paper argues that challenging the idea that individuals with disabilities cannot or should not be parents must start in the courtroom, by changing the attitudes and perceptions of judges presiding over child custody cases and termination of parental rights cases involving parents with mental disabilities.展开更多
I. An Overview of the Right of Privacy for Minors and Relevant Obligee＇s Right to Learn Their Privacy The right to privacy has been recognized as an important personal right by China＇s practitioners and theorists of...I. An Overview of the Right of Privacy for Minors and Relevant Obligee＇s Right to Learn Their Privacy The right to privacy has been recognized as an important personal right by China＇s practitioners and theorists of law although it is not an independent part of the Civil Law. In general, the right of privacy refers to the ＂right of the natural person to enjoy tranquility of private life and his or her right not to allow other persons to invade, learn, use, reveal or publish the kind of information relevant to his private life.＂展开更多
In China, the development of human rights is an inherent part of good governance, as reflected in the following: Firstly, people are able to participate in social and public administration through exercising their ...In China, the development of human rights is an inherent part of good governance, as reflected in the following: Firstly, people are able to participate in social and public administration through exercising their 'democratic rights' under the constitution. Secondly, citizens' fundamental human rights and other civil rights are protected by law. Thirdly, people's rights to know and to express are expanding. Fourthly, the Chinese government is responsive to people's demands, ready to accept their supervision, and is doing its best to improve their living standard. To modernize governance, China must adhere to human rights principles by guaranteeing people's rights to participation, to information and to supervision, and by protecting the fundamental rights of the disadvantaged.展开更多
基金This study was supported by the Pediatric Heart Center at Skåne University Hospital Lund and Lund University,and by the Swedish Children’s Heart Association.
文摘Background:Parents of children with complex right ventricular outflow tract(RVOT)anomalies are confronted with their child’s need for heart surgery early in life and repeated reoperations later on.Preoperative assessment needs to be performed whenever an indication for reoperation is suspected.The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies,in particular,how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reoperation.Method:Individual interviews(n=27)were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis.Results:The analysis resulted in the following five main coexisting themes:The heart surgery keeps my child alive illuminates parents’experiences during and after the assessment and emphasizes that heart surgery,although dreaded,is central for their child’s survival;Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition;the remaining three themes,Unconditional love,Trust in life,and Togetherness,illuminate the ways in which the parents gained inner strength and confidence in their everyday lives.Conclusion:Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused,they experienced several distressing situations during the assessment process that should be addressed.By inviting both the parents and their child to participate in the child’s care,individualized support can take into account the needs of both parents and child.
文摘In this paper, media provides a means of thinking critically about the role of ADA regulations should play in parental fights for individuals with mental disabilities, specifically mental illness, developmental disabilities, and brain injuries. Congress passed the Americans with Disabilities Act more than 20 years ago to ensure the rights of individuals with disabilities, including parental rights. Title II of the ADA applies to decisions made in the courtroom and other governmental agencies, which include child custody cases and termination of parental rights. ＂Reasonable Accommodations＂ is one requirement of the ADA to make society more inclusive for individuals with disabilities, even in the realm of parenting. Under Title II, such modifications would include parenting classes, homecare assistance, support groups, community resources, and counseling. Through a critical examination of experiences as depicted through media and court case analyses of parents with mental disabilities, this paper argues that challenging the idea that individuals with disabilities cannot or should not be parents must start in the courtroom, by changing the attitudes and perceptions of judges presiding over child custody cases and termination of parental rights cases involving parents with mental disabilities.
文摘I. An Overview of the Right of Privacy for Minors and Relevant Obligee＇s Right to Learn Their Privacy The right to privacy has been recognized as an important personal right by China＇s practitioners and theorists of law although it is not an independent part of the Civil Law. In general, the right of privacy refers to the ＂right of the natural person to enjoy tranquility of private life and his or her right not to allow other persons to invade, learn, use, reveal or publish the kind of information relevant to his private life.＂
文摘In China, the development of human rights is an inherent part of good governance, as reflected in the following: Firstly, people are able to participate in social and public administration through exercising their 'democratic rights' under the constitution. Secondly, citizens' fundamental human rights and other civil rights are protected by law. Thirdly, people's rights to know and to express are expanding. Fourthly, the Chinese government is responsive to people's demands, ready to accept their supervision, and is doing its best to improve their living standard. To modernize governance, China must adhere to human rights principles by guaranteeing people's rights to participation, to information and to supervision, and by protecting the fundamental rights of the disadvantaged.
