Suppr超能文献

“往昔业力之果”:关于印度浦那地区女性对先天性异常的认知与态度的定性研究

"Fruits of our past karma": a qualitative study on knowledge and attitudes about congenital anomalies among women in Pune district, India.

作者信息

Kar Anita, Dhamdhere Dipali, Medhekar Aishwarya

机构信息

Birth Defects and Childhood Disability Research Centre, Pune, 411020, India.

出版信息

J Community Genet. 2023 Aug;14(4):429-438. doi: 10.1007/s12687-023-00654-y. Epub 2023 Jun 3.

Abstract

Congenital anomalies are distressing events for future parents/parents when a foetal anomaly is detected during pregnancy or when the infant is born with a disability or a congenital disorder. Maternal health services in India do not provide information on these disorders as part of routine activities. The objective is to understand women's knowledge and attitude on causes, prevention, rights; attituted towards disability; and knowledge on medical care, rehabilitation, and welfare services in Pune district, India, with the goal of identifying the contents of birth defects education resources. The study used a qualitative descriptive design. Six focus group discussions were conducted with 24 women from Pune district. Qualitative content analysis was used to identify emergent themes. Three themes emerged. Firstly, women's knowledge on congenital anomalies was limited. These conditions were discussed generally with other adverse pregnancy experiences, and with reference to children with disabilities. Secondly, pregnancy termination for conditions considered untreatable was majorly advocated by most women. Directive counselling for pregnancy termination by doctors was common. Thirdly, stigmatizing attitudes were responsible for children with disabilities being considered a burden, for maternal blaming, and for the stigma and isolation of families. Knowledge on rehabilitation was limited. The study identified that participants. Three target groups and contents for birth defects education were identified. Women's resources should include knowledge on preconception and antenatal opportunities for reducing risks, available medical care, and legal rights. Parents' resources should provide information on treatment, rehabilitation, legal provisions, and rights of disabled children. Resources for the general community should additionally include disability sensitization messages to ensure the inclusion of children with congenital disabilities.

摘要

当孕期检测到胎儿异常,或者婴儿出生时患有残疾或先天性疾病时,先天性异常对未来的父母来说是令人痛苦的事情。印度的孕产妇保健服务在日常工作中并不提供有关这些疾病的信息。目的是了解印度浦那地区妇女对病因、预防、权利的知识和态度;对残疾的态度;以及对医疗护理、康复和福利服务的知识,目标是确定出生缺陷教育资源的内容。该研究采用定性描述设计。对来自浦那地区的24名妇女进行了6次焦点小组讨论。采用定性内容分析法确定出现的主题。出现了三个主题。首先,妇女对先天性异常的知识有限。这些情况通常与其他不良妊娠经历以及残疾儿童一起讨论。其次,大多数妇女主要主张对被认为无法治疗的情况终止妊娠。医生进行终止妊娠的指导性咨询很常见。第三,污名化态度导致残疾儿童被视为负担、母亲受到指责以及家庭受到污名化和孤立。对康复的知识有限。该研究确定了参与者。确定了出生缺陷教育的三个目标群体和内容。妇女的资源应包括关于孕前和产前降低风险机会、可用医疗护理和法律权利的知识。父母的资源应提供有关残疾儿童治疗、康复、法律规定和权利的信息。普通社区的资源还应包括残疾认知信息,以确保先天性残疾儿童能够融入社会。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dd02/10444738/a915f222cc80/12687_2023_654_Fig1_HTML.jpg

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验