Johannessen Aud, Engedal Knut, Thorsen Kirsten
Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway;
Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway.
Int J Qual Stud Health Well-being. 2016 Apr 8;11:30535. doi: 10.3402/qhw.v11.30535. eCollection 2016.
It is estimated that one in four persons with young-onset dementia (YOD) (<65 years old) has children younger than 18 years old at the onset of the dementia. These children experience a childhood different from what is expected. Adult children of parents with YOD are seldom addressed in research, and the impact of the dementia on the children's development over time has rarely been studied.
The goal of this study was to explore how adult children experienced the influence of their parents' dementia on their own development during adolescence; what coping efforts, strategies, and resources they employed; and how they evaluated the most recent changes in their life situation.
A follow-up, grounded theory approach in two phases was used. Qualitative interviews with 14 informants (18-30 years of age) were conducted in 2014 and one year later, in 2015.
Nearly all the informants expressed that their emotional well-being and their life situation were better at the second interview compared to the time of dementia onset in their parents. To overcome the difficulties of being a child of a parent with YOD, they used different instrumental, cognitive, and emotional coping strategies, subsumed analytically under the concept detachment. This category covers three subcategories of coping strategies: moving apart, greater personal distance, and calmer emotional reactions. Another category, resilience, designates combinations of the coping strategies. Vital for the development of coping resources and resilience was the need the informants had for social support-for people they saw who listened to them and responded to their needs.
Most of the informants reported that they experienced a better life situation and less emotional stress over time as their parent's dementia progressed. They developed better coping capacities and greater resilience. Vital for the development of coping resources and resilience was the need the informants had for social support.
据估计，四分之一的早发性痴呆症（YOD，年龄小于65岁）患者在痴呆症发病时，其子女年龄小于18岁。这些孩子经历了与预期不同的童年。早发性痴呆症患者的成年子女很少在研究中被提及，而且痴呆症对孩子随时间推移的发育影响很少被研究。
本研究的目的是探讨成年子女如何体验父母痴呆症对其青春期自身发育的影响；他们采用了哪些应对努力、策略和资源；以及他们如何评价自己生活状况的最新变化。
采用分两个阶段的后续扎根理论方法。2014年对14名信息提供者（年龄在18 - 30岁之间）进行了定性访谈，并于一年后的2015年进行了再次访谈。
几乎所有信息提供者都表示，与父母痴呆症发病时相比，在第二次访谈时他们的情绪幸福感和生活状况更好。为了克服作为早发性痴呆症患者子女的困难，他们采用了不同的工具性、认知性和情感性应对策略，从分析角度将其归纳在“超脱”这一概念之下。这一类别涵盖应对策略的三个子类别：分开、更大的人际距离和更平静的情绪反应。另一个类别“复原力”指的是应对策略的组合。信息提供者对社会支持的需求——对他们见到的倾听并回应其需求的人的需求，对于应对资源和复原力的发展至关重要。
大多数信息提供者报告说，随着父母痴呆症的进展，随着时间推移他们的生活状况更好，情绪压力更小。他们发展出了更好的应对能力和更强的复原力。信息提供者对社会支持的需求对于应对资源和复原力的发展至关重要。
