Nagl-Cupal Martin, Werner Marlene, Haselmayer Daniela, Falkenstein Thomas
Department of Nursing Science, Faculty of Social Sciences, University of Vienna, 1080 Vienna, Austria.
Endowed Professorship in Nursing Science, Department of Primary Care Medicine, Center of Public Health, Medical University of Vienna, 1090 Vienna, Austria.
Int J Environ Res Public Health. 2025 Aug 19;22(8):1297. doi: 10.3390/ijerph22081297.
Aging parents caring for adult children with disabilities or other care needs face significant challenges and health-related issues over extended periods. The aim of this study was to explore the experiences of aging parents with caregiving responsibilities. This qualitative participatory study followed the research process of a photovoice study. Thirteen parents, aged 51 to 76 years, of adult children with care needs, aged 20 to 49 years, participated in this study. The parents captured photographs depicting their daily lives which were contextualized and coded during group discussions. The data were analyzed using thematic analysis and reviewed collaboratively with the participants. Six key themes emerged in the data analysis. 1. mastering complexity, 2. being an expert and advocate, 3. balancing autonomy and care, 4. care as a lifelong journey, 5. standing on the margins of society, and 6. worrying about the future. This study underscores the urgent need for comprehensive and coordinated support systems that ensure the well-being of aging caregivers while addressing the evolving needs of their adult children.
照顾有残疾或其他护理需求的成年子女的年迈父母，在很长一段时间内面临着重大挑战和与健康相关的问题。本研究的目的是探索承担照料责任的年迈父母的经历。这项定性参与式研究遵循了摄影声音研究的研究过程。13位年龄在51至76岁之间、其成年子女年龄在20至49岁且有护理需求的父母参与了本研究。父母们拍摄了描绘他们日常生活的照片，并在小组讨论中对这些照片进行背景化处理和编码。使用主题分析法对数据进行分析，并与参与者共同进行审查。数据分析中出现了六个关键主题。1. 掌控复杂性，2. 成为专家和倡导者，3. 平衡自主性和照料，4. 照料是一段终身旅程，5. 处于社会边缘，6. 担忧未来。本研究强调迫切需要全面和协调的支持系统，以确保年迈照料者的福祉，同时满足其成年子女不断变化的需求。
