ArticleInternational journal of qualitative studies on health and well-being2017
Sustaining care for a parent with dementia: an indefinite and intertwined process.
Article in International journal of qualitative studies on health and well-being, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 4 papers, 1 of them a synthesis that pooled it.
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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.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
4 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The experiences of those affected by parental young onset dementia: A qualitative systematic literature review.Dementia (London, England) · 2021Pooled it
- Co-creating Humanistic AI AgeTech to Support Dynamic Care Ecosystems: A Preliminary Guiding Model.The Gerontologist · 2024Article
- Family-Centered Care Experiences in Elderly with Chronic Diseases in Communities: Qualitative Study of Patients, Families, Nurses, and Volunteers.Health equity · 2024Article
- Daily time management in dementia: qualitative interviews with persons with dementia and their significant others.BMC geriatrics · 2023Article
Corrections and comments
- Erratum issuedErratum.2017
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values, and "flying blind" in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents' needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.
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Registered trials
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 OpenQuestion graph.