Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care.
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| Title: | Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care. |
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| Authors: | Husić, Samir1 (AUTHOR), Miletić, Bojan2 (AUTHOR), Boskovic, Sandra2 (AUTHOR), Jerlekovic, Marica3,4 (AUTHOR), Friganovic, Adriano2,3 (AUTHOR), Vejzovic, Vedrana5 (AUTHOR) vedrana.vejzovic@mau.se |
| Source: | Inquiry (00469580). 11/14/2025, Vol. 62, p1-13. 13p. |
| Subject Terms: | *Qualitative research, *Decision making, *Experience, *Research, *Research methodology, *Quality of life, *Communication, *Psychology of caregivers, *Caregiver attitudes, Home care services, Palliative treatment, Interviewing, Spouses, Cancer patients, Sound recordings, Thematic analysis, Social support |
| Geographic Terms: | Croatia |
| 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. [ABSTRACT FROM AUTHOR] |
| Copyright of Inquiry (00469580) is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Education Research Complete |
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| 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. [ABSTRACT FROM AUTHOR] |
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| ISSN: | 00469580 |
| DOI: | 10.1177/00469580251392458 |
