Bo Smeets, Niels Janssen, Kirsten Peetoom, Lizzy Boots, Christian Bakker, Marjolein de Vugt
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引用次数: 0
Abstract
Objectives: Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives.
Method: Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets.
Results: A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives.
Conclusion: The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities.
目的:幼年痴呆症(YOD)的症状通常会在工作场所首次出现,导致工作表现受到挑战,最终失去工作。本研究旨在调查患有青年痴呆症的员工及其亲属的经历、工作价值观和支持需求:方法:本研究采用半结构化访谈的方式,探讨患有 YOD 的(前)员工及其亲属的经历、工作价值观和支持需求。随后,分别对员工和亲属进行了焦点小组讨论,以审查访谈结果并确定优先次序。两个数据集都采用了归纳式主题分析法:共进行了 15 次访谈(6 名员工;9 名亲属)和 4 次焦点小组讨论(10 名员工;6 名亲属)。出现了六个主题,其中五个围绕中心主题:工作愿望。其他主题代表了基本的促成因素,包括接受 YOD 诊断的重要性;对 YOD 的了解、认识和理解;开放式沟通、共同决策和合作;工作调整、参与和支持;逐步退出工作和未来展望:研究结果突出表明,YOD 患者在确诊后有强烈的工作意愿,这为开发工作场所支持工具和指导奠定了基础。这有可能帮助 YOD 患者在力所能及的工作范围内保持自信和身份认同。
期刊介绍:
Aging & Mental Health provides a leading international forum for the rapidly expanding field which investigates the relationship between the aging process and mental health. The journal addresses the mental changes associated with normal and abnormal or pathological aging, as well as the psychological and psychiatric problems of the aging population. The journal also has a strong commitment to interdisciplinary and innovative approaches that explore new topics and methods.
Aging & Mental Health covers the biological, psychological and social aspects of aging as they relate to mental health. In particular it encourages an integrated approach for examining various biopsychosocial processes and etiological factors associated with psychological changes in the elderly. It also emphasizes the various strategies, therapies and services which may be directed at improving the mental health of the elderly and their families. In this way the journal promotes a strong alliance among the theoretical, experimental and applied sciences across a range of issues affecting mental health and aging. The emphasis of the journal is on rigorous quantitative, and qualitative, research and, high quality innovative studies on emerging topics.