Hollie Cooper, Jane Simpson, Maria Dale, Fiona J R Eccles
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引用次数: 0
摘要
亨廷顿氏病是一种遗传性神经退行性疾病,对身体和心理都有广泛的影响。父母一方患有亨廷顿症,其子女有 50%的几率携带基因扩增并自身罹患亨廷顿症。本系统性综述和元民族志综合介绍了有关亨廷顿氏症家庭中青少年成长经历的定性研究。我们系统地检索了 MEDLINE、PsycINFO 和 CINAHL 数据库,共有 13 篇论文符合纳入标准。通过元民族志研究过程,确定了四个主题,突出了童年被偷走和争取的方面:人际关系之贼、自我之贼、透明度之贼和寻求开垦。在这些主题中,探讨了青少年在 HD 家庭中成长所面临的复杂挑战,如不良童年经历的影响以及 HD 对依恋关系和社会关系可能产生的影响。研究还考虑了对临床的影响,并对未来的研究提出了建议。
Experiences of young people growing up in a family with Huntington's disease: A meta-ethnography of qualitative research.
Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta-ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta-ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.
期刊介绍:
The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.