University of Missouri, Columbia, MO, USA.
Washington University in St Louis, St Louis, MO, USA.
J Appl Gerontol. 2023 Jul;42(7):1642-1650. doi: 10.1177/07334648231159090. Epub 2023 Feb 28.
More than 11 million Americans provide unpaid care for people with dementia (PWD) and need emotional, financial, and physical support. This study explored how participants in Caregiver Speaks, a social networking and image-based storytelling intervention designed to help caregivers make meaning of caregiving, described their caregiving experiences and needs. Strategies of thematic analysis were used to identify patterns in 28 different caregivers' images ( = 59) and text interactions on social media. Caregivers identified as white (71.4%), as women (92.9%), and as an adult child or child-in-law of the PWD (85.7%). Through images and text, caregivers explained interrelated changes in their behaviors (e.g., managing dual roles), thoughts (e.g., realizing severity of illness), and feelings (e.g., trapped) throughout the caregiving process. Findings reiterate that caregiving changes significantly over time, that visual storytelling helps to concretely capture those changes, and that interventions are needed to respond to caregivers' hardships across the caregiving time span.
超过 1100 万美国人为痴呆症患者（PWD）提供无偿护理，他们需要情感、经济和身体上的支持。本研究探讨了 Caregiver Speaks 的参与者如何描述他们的护理经验和需求，Caregiver Speaks 是一种社交网络和基于图像的叙事干预措施，旨在帮助护理人员理解护理工作的意义。使用主题分析策略来识别社交媒体上 28 位不同护理人员的 59 张图像和文本交互中的模式。护理人员自认为是白人（71.4%）、女性（92.9%），并且是 PWD 的成年子女或子女的配偶（85.7%）。通过图像和文字，护理人员解释了他们在整个护理过程中行为（例如，管理双重角色）、思维（例如，意识到疾病的严重程度）和感觉（例如，被困）的相互关联的变化。研究结果重申，随着时间的推移，护理工作会发生重大变化，视觉叙事有助于具体捕捉这些变化，并且需要干预措施来应对护理人员在整个护理期间的困难。
