VIA Research Centre for Health and Welfare Technology, Research Programme in Dementia, VIA University College, Aarhus, Denmark; Department of Occupational Therapy, VIA University College, Aarhus, Denmark.
VIA Research Centre for Health and Welfare Technology, Research Programme in Dementia, VIA University College, Aarhus, Denmark.
Dementia (London). 2024 Aug;23(6):949-963. doi: 10.1177/14713012241245470. Epub 2024 Apr 5.
Previous research has shown that young adult relatives of parents with dementia experience strain through increased responsibility and changed relationships in the family with potential consequences for their emotional, mental and physical well-being. Less is known about how young adult relatives experience their participation in everyday activities typically associated with young adulthood and how their participation is affected by the parent´s dementia. This study explores young adult relatives' experiences of participation in everyday activities and how their participation was affected by having a parent with dementia. The study followed a qualitative, descriptive approach. Semi-structured individual interviews with 11 young adult relatives (aged 21 - 31) of parents with dementia were conducted. The interviews were analysed using Kirsti Malterud's iterative cross case analysis method 'Systematic text condensation'. The analysis identified three categories: Dilemmas of choosing, Not having a choice and Reversal of roles. The young adult relatives experienced dilemmas and constraints regarding participation in everyday activities usually related to young adulthood. They navigated situations where they were to choose between the parent with dementia and their own everyday activities and they often downgraded or cancelled participation in own activities related to leisure time, school, job and career. Moreover, their participation seemed affected by chores and responsibilities resulting in a lack of energy leading them to forego social activities in particular or change their choice of activities. The young adult relatives need help and support in their everyday lives. Health care professionals are encouraged to focus on relieving them from some of the responsibilities and practical tasks enabling them to live their own lives as young adults, while being part of the family and contributing towards the responsibilities and tasks with which they can cope.
先前的研究表明，痴呆症患者的成年子女因家庭中责任增加和关系改变而感到紧张，这可能对他们的情感、心理和身体健康产生潜在影响。然而，对于成年子女如何体验他们参与与成年期相关的日常活动以及他们的参与如何受到父母痴呆症的影响，人们知之甚少。本研究探讨了成年子女参与日常活动的体验，以及他们的参与如何受到父母痴呆症的影响。该研究采用定性、描述性方法进行。对 11 名成年子女（年龄 21-31 岁）进行了半结构式个体访谈，这些子女的父母患有痴呆症。使用 Kirsti Malterud 的迭代交叉案例分析方法“系统文本浓缩”对访谈进行了分析。分析确定了三个类别：选择的困境、别无选择和角色反转。成年子女在参与与成年期相关的日常活动方面经历了困境和限制。他们在选择痴呆症父母和自己的日常活动之间进行了权衡，他们经常降低或取消与闲暇时间、学校、工作和职业相关的活动参与，或放弃社交活动，或改变活动选择。此外，他们的参与似乎受到家务和责任的影响，导致缺乏精力，使他们无法参与社交活动，特别是或改变他们的活动选择。成年子女在日常生活中需要帮助和支持。鼓励医疗保健专业人员帮助他们减轻一些责任和实际任务，使他们能够像成年人一样生活，同时作为家庭的一部分，为他们能够应对的责任和任务做出贡献。
