Bruinsma Jeroen, Peetoom Kirsten, Bakker Christian, Boots Lizzy, Millenaar Joany, Verhey Frans, de Vugt Marjolein
Department of Psychiatry and Neuropsychology/Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands.
Department of Primary and Community care, Radboud University Medical Centre, Nijmegen, the Netherlands.
Internet Interv. 2021 Apr 23;25:100390. doi: 10.1016/j.invent.2021.100390. eCollection 2021 Sep.
Young-onset dementia (YOD) poses specific challenges for caregivers involved. However, most available support does not address their specific needs. Previously, the web-based Partner in Balance intervention showed promising results and facilitated role adaptation in dementia caregivers. Although the web-based format proved a good fit for YOD caregivers, the evaluation showed a need for tailored content on YOD. Therefore, new content was iteratively developed respectively for spouses and other family caregivers of persons with YOD. This study evaluates how caregivers perceived the tailored content.
A pre-post design was used to prospectively evaluate how end-users perceived two tailored versions of the Partner in Balance intervention, one for spouses and one for other family members of people with YOD. After the intervention, participants were interviewed for approximately 60 min in-person or by telephone using the Program Participation Questionnaire. A qualitative deductive content analysis was used to evaluate (1) usability, (2) feasibility and acceptability, (3) perceptions on intervention content. To evaluate if the intervention facilitated role adaptation, preliminary effects were examined using pre-post questionnaires on self-efficacy, mastery, stress, anxiety and depression.
Spouses ( = 11) and other family members ( = 14) both positively evaluated the tailored content on YOD and valued that the web-based approach could easily be integrated in daily life. Participants perceived the intervention as usable, feasible and acceptable. Participants valued the recognizability of the content. Goal-setting helped participants to translate the intervention to daily life, although for some participants setting goals was difficult. Caregivers of persons with frontotemporal dementia suggested incorporating specific content to further increase recognizability. After participation, participants felt better equipped for the caregiving role. In line with previously demonstrated effects on generic modules of Partner in Balance, the tailored version increased levels of self-efficacy in the group of other family caregivers, (12) = 3.37, = .006.
The tailored Partner in Balance intervention was positively evaluated by YOD caregivers. Offering participants more guidance on goal-setting and adding content about frontotemporal dementia may facilitate implementation.
早发性痴呆（YOD）给相关照料者带来了特殊挑战。然而，现有的大多数支持并未满足他们的特定需求。此前，基于网络的“平衡伙伴”干预显示出了有前景的结果，并促进了痴呆照料者的角色适应。尽管基于网络的形式被证明非常适合YOD照料者，但评估显示需要针对YOD的定制内容。因此，分别为YOD患者的配偶和其他家庭照料者迭代开发了新内容。本研究评估了照料者对定制内容的看法。
采用前后设计前瞻性地评估最终用户对“平衡伙伴”干预的两个定制版本的看法，一个针对配偶，另一个针对YOD患者的其他家庭成员。干预后，使用项目参与问卷通过面对面或电话对参与者进行约60分钟的访谈。采用定性演绎内容分析来评估（1）可用性，（2）可行性和可接受性，（3）对干预内容的看法。为了评估干预是否促进了角色适应，使用关于自我效能感、掌控感（mastery）、压力、焦虑和抑郁的前后问卷来检查初步效果。
配偶（n = 11）和其他家庭成员（n = 14）都对针对YOD的定制内容给予了积极评价，并重视基于网络的方法可以轻松融入日常生活。参与者认为该干预是可用的、可行的和可接受的。参与者重视内容的可识别性。目标设定帮助参与者将干预转化为日常生活，尽管对一些参与者来说设定目标很困难。额颞叶痴呆患者的照料者建议纳入特定内容以进一步提高可识别性。参与后，参与者感觉自己更有能力承担照料角色。与之前在“平衡伙伴”通用模块上显示的效果一致，定制版本提高了其他家庭照料者群体的自我效能感水平，t(12) = 3.37，p = .006。
YOD照料者对定制的“平衡伙伴”干预给予了积极评价。为参与者提供更多关于目标设定的指导并添加有关额颞叶痴呆的内容可能会促进实施。
