Abbott-Anderson Kristen, Higami Yoko, Yamauchi Saika, Chung Pat, Ho Ken Hok Man, Thaqi Qëndresa, Naef Rahel
University of Wisconsin-Eau Claire College of Nursing and Health Sciences, Eau Claire, Wisconsin, USA.
Faculty of Nursing, Osaka Medical and Pharmaceutical University, Osaka, Japan.
J Adv Nurs. 2025 Aug;81(8):5038-5049. doi: 10.1111/jan.16718. Epub 2025 Jan 3.
Caution around the COVID-19 pandemic resulted in visitation restrictions to prevent the spread of the virus among vulnerable older persons living in long-term care (LTC), which posed a threat to individual well-being and family togetherness across the globe. The purpose of this study was to explore family caregiver's experience of having a person who is living with dementia residing in a long-term care facility during the COVID-19 pandemic.
Qualitative descriptive study using constructivist grounded theory (GT) methodology.
The study was carried out in five countries: the United States, Switzerland, Hong Kong (China), United Kingdom and Japan. Data were collected between June 2021 and August 2022. In-depth understanding and initial theorising about experiences and social interactions between family members, residents and long-term care staff across cultural contexts, strategies from constructive GT were used. Data were collected through 15 semi-structured, in-depth interviews with 16 family members. Analysis included individual and team-based coding, memo-writing, constant comparison and category generation.
Due to visit restrictions, families faced upsetting situations of exclusion. The caregiver participants experienced inequality, felt isolated and witnessed residents' despair and helplessness. Analysis revealed four subthemes to the basic social process of 'negotiating for access to maintain relational continuity': (1) Feeling excluded, isolated and upset; (2) facing depersonalising situations; (3) navigating challenging interactions; and (4) living with (post-) pandemic circumstances.
This study highlights the suffering experienced by family caregivers and their loved ones living with dementia in long-term care during COVID-19, demonstrating the key role that relationships play in family care. During similar public health crises, policies and infection prevention measures that depict family and close caregivers as visitors whose access needs to be regulated need to be altered into policies that enable a culture of partnership and inclusion acknowledging the importance of social interactions for health and well-being.
The COREQ checklist was followed.
No patient or public contribution.
Not applicable due to study design.
对新冠疫情的警惕导致了探视限制，以防止病毒在居住于长期护理机构的脆弱老年人中传播，这对全球范围内的个人福祉和家庭团聚构成了威胁。本研究的目的是探讨在新冠疫情期间，家庭照顾者照顾居住在长期护理机构中的痴呆症患者的经历。
采用建构主义扎根理论（GT）方法的定性描述性研究。
该研究在五个国家进行：美国、瑞士、中国香港、英国和日本。数据收集于2021年6月至2022年8月之间。运用建构主义GT的策略，对不同文化背景下家庭成员、居民和长期护理工作人员之间的经历和社会互动进行深入理解和初步理论化。通过对16名家庭成员进行15次半结构化深度访谈收集数据。分析包括基于个体和团队的编码、撰写备忘录、持续比较和类别生成。
由于探视限制，家庭面临着令人沮丧的被排斥情况。照顾者参与者经历了不平等，感到孤立无援，并目睹了居民的绝望和无助。分析揭示了“协商获得探视权以维持关系连续性”这一基本社会过程的四个子主题：（1）感到被排斥、孤立和沮丧；（2）面临非人性化情况；（3）应对具有挑战性的互动；（4）与疫情后情况共存。
本研究突出了新冠疫情期间家庭照顾者及其患有痴呆症的亲人在长期护理中所遭受的痛苦，表明了关系在家庭护理中所起的关键作用。在类似的公共卫生危机期间，将家庭和亲密照顾者描绘为探视需要受到限制的访客的政策和感染预防措施，需要转变为承认社会互动对健康和福祉的重要性、促进伙伴关系和包容文化的政策。
遵循COREQ清单。
无患者或公众贡献。
由于研究设计，不适用。
