ArticleChronic illness2023
When chronic critical illness is a family affair: A multi-perspective qualitative study of family involvement in long-term care.
Article in Chronic illness, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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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
6 citing papers in PubMed.
- Enhancing personal capacities in families with or at risk of type 2 diabetes: qualitative investigation of the GO EASY intervention.BMC public health · 2026Article
- Surrogate Perspectives on the Communication and Support Processes That Enable Them as Active Decision-Makers Across Chronic Critical Illness.CHEST critical care · 2026Article
- Navigating the Healthcare System With Chronic Illness: A Qualitative Study of Caregiver Experiences.Scandinavian journal of caring sciences · 2025Article
- Nurses' Experiences of Communicating With Families in Municipal Home Health Care.Nursing open · 2024Article
- Codesign of a Quality Improvement Tool for Adults With Prolonged Critical Illness: A Modified Delphi Consensus Study.Critical care explorations · 2024Article
- Family-Centered Care Experiences in Elderly with Chronic Diseases in Communities: Qualitative Study of Patients, Families, Nurses, and Volunteers.Health equity · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThose with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care.
methodsIn this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers.
resultsInvolvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. DISCUSSION: The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.
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