Evidence mapPaperPMID 39749859Full record

ArticleJournal of advanced nursing2025

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

Kristen Abbott-Anderson, Yoko Higami, Saika Yamauchi, Pat Chung, Ken Hok Man Ho, Qëndresa Thaqi, Rahel Naef

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Article in Journal of advanced nursing, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

7 authors.

Kristen Abbott-AndersonUniversity of Wisconsin-Eau Claire College of Nursing and Health Sciences, Eau Claire, Wisconsin, USA.ORCID https://orcid.org/0000-0003-3885-010X
Yoko HigamiFaculty of Nursing, Osaka Medical and Pharmaceutical University, Osaka, Japan.ORCID https://orcid.org/0000-0001-9726-6646
Saika YamauchiFaculty of Nursing, Osaka Medical and Pharmaceutical University, Osaka, Japan.ORCID https://orcid.org/0009-0004-9696-1451
Pat ChungFaculty of Medicine, Health and Social Care, Canterbury Christ Church University, Canterbury, UK.ORCID https://orcid.org/0000-0002-1731-4706
Ken Hok Man HoSchool of Nursing and Midwifery, La Trobe University, Melbourne, Victoria, Australia.ORCID https://orcid.org/0000-0003-4934-2450
Qëndresa ThaqiInstitute for Implementation Science in Health Care, Faculty of Medicine, University of Zurich, Zurich, Switzerland.ORCID https://orcid.org/0000-0002-6905-8089
Rahel NaefInstitute for Implementation Science in Health Care, Faculty of Medicine, University of Zurich, Zurich, Switzerland.ORCID https://orcid.org/0000-0002-5872-076X

Funding

Daiwa Anglo-Japanese Foundation
6 · The paper itself

Abstract

aimsCaution 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.

designQualitative descriptive study using constructivist grounded theory (GT) methodology.

methodsThe 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.

resultsDue 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.

conclusionThis 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

methodThe COREQ checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: Not applicable due to study design.

Indexed as

CaregiversCOVID-19DementiaFamilyLong-Term CareAdultAgedAged, 80 and overChinaFemaleGrounded TheoryHong KongHumansJapanMaleMiddle AgedCOVID‐19cultural issuesdementiafamily caregivergrounded theoryinteractionlong‐term carequalitative study

Identifiers

PMID39749859
PMCPMC12271665

What Socratic holds

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LicenceCC BY-NC-ND
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.