“我们过去业力的果实”:对印度浦那地区妇女先天畸形的知识和态度的定性研究。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2023-08-01 DOI:10.1007/s12687-023-00654-y
Anita Kar, Dipali Dhamdhere, Aishwarya Medhekar
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引用次数: 0

摘要

当怀孕期间发现胎儿异常或婴儿出生时患有残疾或先天性疾病时,先天性异常是对未来父母/父母的痛苦事件。印度的孕产妇保健服务不提供关于这些疾病的信息,作为日常活动的一部分。目的是了解妇女对原因、预防和权利的知识和态度;对残疾持态度的;以及印度浦那地区的医疗保健、康复和福利服务方面的知识,目的是确定出生缺陷教育资源的内容。本研究采用定性描述设计。与来自浦那地区的24名妇女进行了6次焦点小组讨论。定性内容分析用于识别紧急主题。出现了三个主题。首先,女性对先天畸形的认识有限。这些情况一般讨论与其他不良妊娠经历,并参照残疾儿童。其次,大多数妇女主要主张在认为无法治疗的情况下终止妊娠。医生对终止妊娠的指导咨询很常见。第三,污名化的态度导致残疾儿童被视为一种负担,导致母亲指责残疾儿童,导致家庭受到污名化和孤立。关于康复的知识有限。该研究确定了参与者。确定了出生缺陷教育的三个目标人群和内容。妇女的资源应包括关于减少风险的孕前和产前机会、现有医疗保健和法律权利的知识。父母的资源应提供有关治疗、康复、法律规定和残疾儿童权利的信息。一般社区的资源还应包括残疾敏感信息,以确保包括先天性残疾儿童。
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"Fruits of our past karma": a qualitative study on knowledge and attitudes about congenital anomalies among women in Pune district, India.

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.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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