Family Caregivers' Experiences of Long‐Term Care Residents Living With Dementia During the COVID ‐19 Pandemic: An International Grounded Theory Study

Journal article

Abbott‐Anderson, K., Higami, Y., Yamauchi, S., Chung, P., Ho, K., Thaqi, Q. and Naef, R. 2025. Family Caregivers' Experiences of Long‐Term Care Residents Living With Dementia During the COVID ‐19 Pandemic: An International Grounded Theory Study. Journal of Advanced Nursing. 81 (8), pp. 5038-5049. https://doi.org/10.1111/jan.16718

Publication dates
Authors	Abbott‐Anderson, K., Higami, Y., Yamauchi, S., Chung, P., Ho, K., Thaqi, Q. and Naef, R.
Abstract	Aims 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. Design Qualitative descriptive study using constructivist grounded theory (GT) methodology. Methods 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. Results 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. Conclusion 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. Reporting Method The COREQ checklist was followed. Patient or Public contribution No patient or public contribution. Protocol Registration Not applicable due to study design.
Keywords	COVID-19; Cultural issues; Dementia; Familty caregiver; Grounded theory; Interaction; Long-term care; Qualitative study
Year	2025
Journal	Journal of Advanced Nursing
Journal citation	81 (8), pp. 5038-5049
Publisher	Wiley
ISSN	0309-2402
	1365-2648
Digital Object Identifier (DOI)	https://doi.org/10.1111/jan.16718
Official URL	https://onlinelibrary.wiley.com/doi/10.1111/jan.16718
Funder	Daiwa Anglo-Japanese Foundation
Print	03 Jan 2025
Online	03 Jan 2025
Publication process dates
Deposited	13 Jan 2025
Accepted	18 Dec 2024
Publisher's version	Journal of Advanced Nursing - 2025 - Abbott‐Anderson - Family Caregivers Experiences of Long‐Term Care Residents Living.pdf File Access Level Open
Output status	Published
Additional information	Publications router: Date 2024-12-18 of type 'accepted_date' included in notification. Publications router: Date 2025-01-03 of type 'publication_date' with format 'electronic' included in notification Publications router: Date 2025-01-03 of type 'epub' included in notification Publications router: Date 2025-01-03 of type 'issued' included in notification Publications router: Date 2024-06-18 of type 'received' included in notification Publications router: Date 2024-12-18 of type 'accepted' included in notification Publications router: Date 2025-01-03 of type 'published' included in notification
	Publications router: License for VOR version of this article starting on 2025-01-03: http://creativecommons.org/licenses/by-nc-nd/4.0/ included in notification
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