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本文引用的文献

1
Information management in families who have a child with a genetic condition.患有基因疾病儿童的家庭中的信息管理。
J Pediatr Nurs. 2009 Jun;24(3):194-204. doi: 10.1016/j.pedn.2008.07.010.
2
Parents' concerns about issues related to their children's genetic conditions.父母对与子女遗传状况相关问题的担忧。
J Spec Pediatr Nurs. 2008 Jan;13(1):4-14. doi: 10.1111/j.1744-6155.2008.00129.x.
3
Parents' perceptions of functioning in families having a child with a genetic condition.父母对患有遗传性疾病孩子的家庭功能的认知。
J Genet Couns. 2007 Aug;16(4):481-92. doi: 10.1007/s10897-006-9084-x. Epub 2007 Feb 23.
4
Parents sharing information with their children about genetic conditions.父母与子女分享有关遗传疾病的信息。
J Pediatr Health Care. 2005 Sep-Oct;19(5):267-75. doi: 10.1016/j.pedhc.2005.05.008.
5
Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed.抚养身患重病/依赖技术且发育迟缓儿童的家庭中的常态化问题。
Qual Health Res. 2005 Jul;15(6):807-20. doi: 10.1177/1049732305276754.
6
Growing up and living with cystic fibrosis: everyday life and encounters with the health care and social services--a qualitative study.
ANS Adv Nurs Sci. 2003 Apr-Jun;26(2):149-59. doi: 10.1097/00012272-200304000-00007.
7
Promoting normalization in families with preschool children with type 1 diabetes.促进患有1型糖尿病的学龄前儿童家庭的正常化。
J Spec Pediatr Nurs. 2002 Jul-Sep;7(3):113-20. doi: 10.1111/j.1744-6155.2002.tb00160.x.
8
As normal a life as possible: mothers and their daughters with congenital heart disease.尽可能正常的生活:患有先天性心脏病的母亲及其女儿
Health Care Women Int. 2002 Jul-Aug;23(5):481-91. doi: 10.1080/073993302760190083.
9
Mothers and their disabled children: refining the concept of normalization.母亲及其残疾子女:完善正常化概念。
Health Care Women Int. 2000 Dec;21(8):659-76. doi: 10.1080/073993300300340501.
10
Clarifying the concept of normalization.
Image J Nurs Sch. 1999;31(3):209-14. doi: 10.1111/j.1547-5069.1999.tb00482.x.

家长对正常化结果和意义的看法。

Parental perceptions of the outcome and meaning of normalization.

机构信息

School of Nursing, University of North Carolina at Chapel Hill, 2007 Carrington Hall - CB 7460, Chapel Hill, NC 27599, USA.

出版信息

Res Nurs Health. 2010 Apr;33(2):87-98. doi: 10.1002/nur.20367.

DOI:10.1002/nur.20367
PMID:20108258
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2943872/
Abstract

The purpose of this secondary analysis was to identify the meaning of normalization for parents of a child with a chronic genetic condition. The sample was comprised of 28 families (48 parents), selected to reflect two groups: Normalization Present (NP) and Normalization Absent (NA). Constant comparison analysis was used to identify themes characterizing parents' perceptions of the meaning of normalization. The meanings parents attributed to normalization reflected their evaluation of condition management, parenting role, and condition impact, with parents in the NP and NA groups demonstrating distinct patterns of meaning. These meaning patterns are discussed as an outcome of normalization. Providers can play a pivotal role in helping families achieve normalization by providing guidance on how to balance condition management with normal family life.

摘要

本二次分析旨在确定慢性遗传疾病患儿父母对正常化的理解。该样本由 28 个家庭(48 位家长)组成,选择反映两个群体:正常化存在(NP)和正常化缺失(NA)。采用恒比分析识别描述父母对正常化意义的看法的主题。父母赋予正常化的意义反映了他们对疾病管理、育儿角色和疾病影响的评估,NP 和 NA 组的父母表现出明显不同的意义模式。这些意义模式被讨论为正常化的结果。提供者可以通过提供如何平衡疾病管理与正常家庭生活的指导,在帮助家庭实现正常化方面发挥关键作用。