{"title":"“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。","authors":"Anita Kar, Dipali Dhamdhere, Aishwarya Medhekar","doi":"10.1007/s12687-023-00654-y","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":null,"pages":null},"PeriodicalIF":1.5000,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10239211/pdf/","citationCount":"0","resultStr":"{\"title\":\"\\\"Fruits of our past karma\\\": a qualitative study on knowledge and attitudes about congenital anomalies among women in Pune district, India.\",\"authors\":\"Anita Kar, Dipali Dhamdhere, Aishwarya Medhekar\",\"doi\":\"10.1007/s12687-023-00654-y\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":46965,\"journal\":{\"name\":\"Journal of Community Genetics\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2023-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10239211/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Community Genetics\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1007/s12687-023-00654-y\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Community Genetics","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1007/s12687-023-00654-y","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
"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.
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.