Groennestad Hanne, Malmedal Wenche
Department of Public Health and Nursing, Norwegian University of Science and Technology (NTNU), Trondheim 7491, Norway.
Nurs Res Pract. 2022 Jul 31;2022:7945773. doi: 10.1155/2022/7945773. eCollection 2022.
Children of a parent with early-onset dementia (EOD) are confronted with losing a parent to a progressive neurodegenerative illness, usually perceived as an older adult illness, which may have a great impact on their lives at a time that is usually preserved for self-development.
The objective of this study is to explore the experiences and perceptions of young adult children of a parent with EOD, with specific focus on personal lives and family and social relationships in a Norwegian context.
Semistructured interviews with 10 young adult children between the ages of 19 and 30 years of a parent with EOD were analysed using a thematic analysis.
The analysis identified six main themes. and . The participants expressed an overarching feeling of living parallel lives, summarised by the phrase Furthermore, the themes demonstrated that the participants experienced difficulties with managing new responsibilities, at the same time, as preserving their own lives. They also shared concerns about the future and often experienced a lack of understanding and support from others. Finally, the need for targeted support throughout the illness was a central theme, whereby many felt more comfortable talking with someone with similar experiences or knowledge of their situation.
The findings in this study strengthen the notion that the children of persons with EOD experience a challenging life situation, underlining the need for a person- and family-oriented approach.
早发性痴呆（EOD）患者的子女面临着因一种进行性神经退行性疾病而失去父母的情况，这种疾病通常被视为一种老年疾病，而在通常用于自我发展的时期，这可能会对他们的生活产生重大影响。
本研究的目的是探讨EOD患者的成年子女的经历和看法，特别关注挪威背景下的个人生活以及家庭和社会关系。
对10名年龄在19至30岁之间的EOD患者的成年子女进行了半结构化访谈，并采用主题分析法进行分析。
分析确定了六个主要主题。 以及 。参与者表达了一种生活仿佛平行展开的总体感受，用“此外，这些主题表明参与者在承担新责任的同时，在维持自己生活方面也遇到了困难。他们还对未来表示担忧，并且常常感到缺乏他人的理解和支持。最后，在整个疾病过程中需要有针对性的支持是一个核心主题，由此许多人觉得与有类似经历或了解他们情况的人交谈会更自在。
本研究的结果强化了这样一种观念，即EOD患者的子女经历着具有挑战性的生活状况，强调了需要采取以人为本和以家庭为导向的方法。
