Having a Parent with Early-Onset Dementia: A Qualitative Study of Young Adult Children.

IF 2.3 Q1 NURSING
Nursing Research and Practice Pub Date : 2022-07-31 eCollection Date: 2022-01-01 DOI:10.1155/2022/7945773
Hanne Groennestad, Wenche Malmedal
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引用次数: 2

Abstract

Background: 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.

Objective: 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.

Methods: 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.

Results: The analysis identified six main themes. "Upon discovering dementia, Keeping the family together, Others do not understand, A sense of relief, A need for support" and Apprehension for the future. The participants expressed an overarching feeling of living parallel lives, summarised by the phrase "We are not in the same boat." 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.

Conclusion: 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.

父母有早发性痴呆:对年轻成年子女的定性研究。
背景:父母患有早发性痴呆(EOD)的孩子面临着父母因进行性神经退行性疾病而失去父母的问题,通常被认为是一种老年人疾病,这可能会对他们的生活产生很大的影响,而这段时间通常是为自我发展而保留的。目的:本研究的目的是探讨父母患有排爆症的年轻成年子女的经历和看法,特别关注挪威背景下的个人生活、家庭和社会关系。方法:采用半结构化访谈法对10名年龄在19至30岁之间的父母患有排爆症的年轻成年子女进行主题分析。结果:分析确定了六个主要主题。“发现失智症时,维持家人在一起,其他人不理解,一种解脱感,需要支持”和对未来的担忧。参与者表达了一种平行生活的总体感觉,用一句话概括就是“我们不在同一条船上”。此外,这些主题表明,参与者在维护自己生命的同时,在管理新的责任方面遇到了困难。他们对未来也有共同的担忧,并且经常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中心主题,因此许多人觉得与有类似经历或了解他们情况的人交谈更舒服。结论:本研究的发现强化了这样一种观点,即排爆者的孩子经历了一个充满挑战的生活环境,强调了以个人和家庭为导向的方法的必要性。
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
CiteScore
2.90
自引率
0.00%
发文量
21
审稿时长
19 weeks
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