ArticleInquiry : a journal of medical care organization, provision and financing
Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care.
Article in Inquiry : a journal of medical care organization, provision and financing. 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 2 papers.
What it found
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.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed.
- Financial Toxicity in Neuromyelitis Optica Spectrum Disorder: An ABC-X Mixed-Methods Study.Brain and behavior · 2026Article
- The burden and needs of primary caregivers in home-based palliative care: a qualitative study based on social-ecological systems theory.BMC palliative care · 2026Article
Corrections and comments
- Erratum issued
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Informal caregivers provide essential support to cancer patients from diagnosis through treatment, palliative care, and end-of-life care. While their practical contributions are widely acknowledged, the emotional and psychological experiences of caregivers remain underexplored, particularly in home-based palliative care settings. Understanding these experiences is crucial to improving support and interventions for caregivers. This study explored the emotional and subjective experiences of informal caregivers providing home-based palliative care for family members with cancer, using retrospective data collected after the patient's death. A qualitative exploratory study was conducted using semi-structured interviews with 12 informal caregivers recruited from Primorsko-Goranska County, Croatia. Interviews were conducted face-to-face, audio-recorded, transcribed verbatim, and analyzed using thematic analysis to capture patterns and insights in caregivers' experiences. Analysis revealed one overarching theme, "Still Invisible but Essential," and 2 major themes: "Confronting the reality of an incurable cancer diagnosis" and "Facing the paradox - choosing between length and quality of life," encompassing 5 sub-themes. Caregivers described both rewarding and stressful aspects of care, including emotional challenges, communication difficulties, decision-making burdens, and unmet needs for professional support, alongside practical caregiving responsibilities. Informal caregivers are indispensable to home-based palliative care, yet their emotional and subjective experiences are often overlooked. Findings highlight the need for tailored interventions and support services addressing both practical and emotional aspects of caregiving, informing policy, clinical practice, and caregiver support in Croatia and similar contexts.
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What Socratic holds
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 Socratic graph.