Life story of Iranian parents of a child with phenylketonuria: a qualitative study.

IF 1.5 Q4 GENETICS & HEREDITY

Journal of Community Genetics Pub Date : 2023-08-01 DOI:10.1007/s12687-023-00653-z

Marjan Mardani-Hamooleh, Haydeh Heidari

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Abstract

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.

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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。

苯丙酮尿症(PKU)患儿的父母在照顾孩子方面面临许多挑战。对于卫生保健工作者来说，了解患有PKU儿童的父母的情况和他们的需求是至关重要的。本研究的目的是探讨患有PKU的孩子的父母的生活故事。这个定性研究是用传统的内容分析方法完成的。有目的地选择了24位家长。进行了半结构化访谈。数据分析确定了三个主要主题，包括父母的反应、父母对患有PKU的孩子的影响以及父母的需求。患有PKU的孩子的父母可以被认为是有心理健康风险的人，因为他们感到孤立，他们孤独地挣扎着控制疾病及其对孩子的影响。本研究表明，由于社会环境的误解和态度，母亲需要更多的支持。因此，有必要了解这一群体，了解他们的需求和生活，并在卫生系统中为父母提供进一步的支持和促进共情。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Community Genetics GENETICS & HEREDITY-

CiteScore

3.30

自引率

5.30%

发文量

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.