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Abstract：
To describe parents\' past and present experiences of their newborn infant\'s therapeutic hypothermia (TH) treatment after perinatal asphyxia 10-13 years after the event.
Newborn infants are treated with TH following perinatal asphyxia to improve neurodevelopmental outcomes.
A qualitative descriptive design using focus groups (FGs).
Twenty one parents to 15 newborn infants treated with TH between 2007 and 2009 participated in five FGs. The FGs were transcribed verbatim and analysed using framework approach. The SRQR checklist was followed for study reporting.
Two main categories were identified: hardships and reliefs during TH treatment and struggles of everyday life. Both categories include three subcategories, the first: (1) concern and gratitude for the unrecognized treatment, (2) insufficiency of information and proposed participation and (3) NICU nurses instilled security and hope. The second with subcategories: (1) unprocessed experiences of the TH treatment, (2) later challenges at school and (3) existential and psychological challenges in everyday life.
TH of their newborns affected the parents psychologically not only during the treatment, but lasted months and years later. Information and communication with health care professionals and school management were inefficient and inadequate. The parents\' concerns could be prevented by an improved identification and understanding of the problems and the needs of the infants and their families before discharge.
Through more personalized and efficient preparation and communication by the nursing staff before discharge, many of the parents\' worries and problems could be reduced. Check-up of parents\' needs of psychosocial support before and after discharge and offering counselling should become routine. Also, nurses at Well-Baby Clinics and in school health care should receive knowledge about TH treatment and the challenges the children and the parents experience.
Participation of parents was limited to the data provided through interviews.
Newborn infants are treated with TH following perinatal asphyxia to improve neurodevelopmental outcomes.
A qualitative descriptive design using focus groups (FGs).
Twenty one parents to 15 newborn infants treated with TH between 2007 and 2009 participated in five FGs. The FGs were transcribed verbatim and analysed using framework approach. The SRQR checklist was followed for study reporting.
Two main categories were identified: hardships and reliefs during TH treatment and struggles of everyday life. Both categories include three subcategories, the first: (1) concern and gratitude for the unrecognized treatment, (2) insufficiency of information and proposed participation and (3) NICU nurses instilled security and hope. The second with subcategories: (1) unprocessed experiences of the TH treatment, (2) later challenges at school and (3) existential and psychological challenges in everyday life.
TH of their newborns affected the parents psychologically not only during the treatment, but lasted months and years later. Information and communication with health care professionals and school management were inefficient and inadequate. The parents\' concerns could be prevented by an improved identification and understanding of the problems and the needs of the infants and their families before discharge.
Through more personalized and efficient preparation and communication by the nursing staff before discharge, many of the parents\' worries and problems could be reduced. Check-up of parents\' needs of psychosocial support before and after discharge and offering counselling should become routine. Also, nurses at Well-Baby Clinics and in school health care should receive knowledge about TH treatment and the challenges the children and the parents experience.
Participation of parents was limited to the data provided through interviews.
摘要：
目的：描述父母在围产期窒息后10-13年的新生儿治疗性低温（TH）治疗的过去和现在的经验。
背景：新生儿在围产期窒息后接受TH治疗以改善神经发育结局。
方法：使用焦点小组（FGs）的定性描述性设计。
方法：2007年至2009年期间，21名父母和15名接受TH治疗的新生儿参加了5次FG。FGs被逐字转录，并使用框架方法进行分析。根据SRQR检查表进行研究报告。
结果：确定了两个主要类别：TH治疗期间的困难和救济以及日常生活中的挣扎。这两个类别都包括三个子类别，第一:(1)对未得到承认的待遇的关心和感谢，（2）信息不足和提议的参与；（3）NICU护士灌输的安全和希望。第二个带有子类别：（1）TH治疗的未加工经验，（2）后来在学校的挑战和（3）日常生活中的生存和心理挑战。
结论：新生儿的TH不仅在治疗期间影响了父母的心理，但持续了几个月甚至几年。与卫生保健专业人员和学校管理层的信息和沟通效率低下且不足。通过在出院前更好地识别和理解婴儿及其家人的问题和需求，可以避免父母的担忧。
结论：通过护理人员在出院前进行更个性化、更有效的准备和沟通，许多父母的担忧和问题可以减少。父母在出院前后对社会心理支持的需求进行检查并提供咨询应成为常规。此外，Well-Baby诊所和学校医疗保健的护士应获得有关TH治疗以及儿童和父母所经历的挑战的知识。
■父母的参与仅限于通过访谈提供的数据。
背景：新生儿在围产期窒息后接受TH治疗以改善神经发育结局。
方法：使用焦点小组（FGs）的定性描述性设计。
方法：2007年至2009年期间，21名父母和15名接受TH治疗的新生儿参加了5次FG。FGs被逐字转录，并使用框架方法进行分析。根据SRQR检查表进行研究报告。
结果：确定了两个主要类别：TH治疗期间的困难和救济以及日常生活中的挣扎。这两个类别都包括三个子类别，第一:(1)对未得到承认的待遇的关心和感谢，（2）信息不足和提议的参与；（3）NICU护士灌输的安全和希望。第二个带有子类别：（1）TH治疗的未加工经验，（2）后来在学校的挑战和（3）日常生活中的生存和心理挑战。
结论：新生儿的TH不仅在治疗期间影响了父母的心理，但持续了几个月甚至几年。与卫生保健专业人员和学校管理层的信息和沟通效率低下且不足。通过在出院前更好地识别和理解婴儿及其家人的问题和需求，可以避免父母的担忧。
结论：通过护理人员在出院前进行更个性化、更有效的准备和沟通，许多父母的担忧和问题可以减少。父母在出院前后对社会心理支持的需求进行检查并提供咨询应成为常规。此外，Well-Baby诊所和学校医疗保健的护士应获得有关TH治疗以及儿童和父母所经历的挑战的知识。
■父母的参与仅限于通过访谈提供的数据。
