{"title":"一个患有苯丙酮尿症儿童的伊朗父母的生活故事:一项定性研究。","authors":"Marjan Mardani-Hamooleh, Haydeh Heidari","doi":"10.1007/s12687-023-00653-z","DOIUrl":null,"url":null,"abstract":"<p><p>Parents of a child with phenylketonuria (PKU) face many challenges in childcare. It is crucial for health care workers to understand the situation of parents of a child with PKU and their needs. The purpose of this study was to explore the life story of parents with a child with PKU. This qualitative study has been done with a conventional content analysis approach. Twenty-four parents were selected purposefully. A semi-structured interview was conducted. Data analysis identified three main themes, which included parental reactions, consequences of a child with PKU in parents, and parents' needs. Parents of children with PKU can be considered people at risk for mental health because of their feelings of isolation and their lonely struggle to manage the disease and its effects on their child. This study shows that mothers need more support due to the misconceptions in and attitudes of their social environment. Therefore, it is necessary to understand this group, their needs and lives, and provide further support and promote empathy in the health system for the parents.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"14 4","pages":"419-427"},"PeriodicalIF":1.5000,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10444926/pdf/12687_2023_Article_653.pdf","citationCount":"0","resultStr":"{\"title\":\"Life story of Iranian parents of a child with phenylketonuria: a qualitative study.\",\"authors\":\"Marjan Mardani-Hamooleh, Haydeh Heidari\",\"doi\":\"10.1007/s12687-023-00653-z\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Parents of a child with phenylketonuria (PKU) face many challenges in childcare. It is crucial for health care workers to understand the situation of parents of a child with PKU and their needs. The purpose of this study was to explore the life story of parents with a child with PKU. This qualitative study has been done with a conventional content analysis approach. Twenty-four parents were selected purposefully. A semi-structured interview was conducted. Data analysis identified three main themes, which included parental reactions, consequences of a child with PKU in parents, and parents' needs. Parents of children with PKU can be considered people at risk for mental health because of their feelings of isolation and their lonely struggle to manage the disease and its effects on their child. This study shows that mothers need more support due to the misconceptions in and attitudes of their social environment. Therefore, it is necessary to understand this group, their needs and lives, and provide further support and promote empathy in the health system for the parents.</p>\",\"PeriodicalId\":46965,\"journal\":{\"name\":\"Journal of Community Genetics\",\"volume\":\"14 4\",\"pages\":\"419-427\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2023-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10444926/pdf/12687_2023_Article_653.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Community Genetics\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1007/s12687-023-00653-z\",\"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/s12687-023-00653-z","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
Life story of Iranian parents of a child with phenylketonuria: a qualitative study.
Parents of a child with phenylketonuria (PKU) face many challenges in childcare. It is crucial for health care workers to understand the situation of parents of a child with PKU and their needs. The purpose of this study was to explore the life story of parents with a child with PKU. This qualitative study has been done with a conventional content analysis approach. Twenty-four parents were selected purposefully. A semi-structured interview was conducted. Data analysis identified three main themes, which included parental reactions, consequences of a child with PKU in parents, and parents' needs. Parents of children with PKU can be considered people at risk for mental health because of their feelings of isolation and their lonely struggle to manage the disease and its effects on their child. This study shows that mothers need more support due to the misconceptions in and attitudes of their social environment. Therefore, it is necessary to understand this group, their needs and lives, and provide further support and promote empathy in the health system for the parents.
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.