View in EDS HTML Full Text PDF Full Text

Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care.

Saved in:
Bibliographic Details
Title: Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care.
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
Full text is not displayed to guests.
FullText Links:
  – Type: pdflink
Text:
  Availability: 1
Header DbId: ehh
DbLabel: Education Research Complete
An: 189521914
AccessLevel: 6
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care.
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Husić%2C+Samir%22">Husić, Samir</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Miletić%2C+Bojan%22">Miletić, Bojan</searchLink><relatesTo>2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Boskovic%2C+Sandra%22">Boskovic, Sandra</searchLink><relatesTo>2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jerlekovic%2C+Marica%22">Jerlekovic, Marica</searchLink><relatesTo>3,4</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Friganovic%2C+Adriano%22">Friganovic, Adriano</searchLink><relatesTo>2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Vejzovic%2C+Vedrana%22">Vejzovic, Vedrana</searchLink><relatesTo>5</relatesTo> (AUTHOR)<i> vedrana.vejzovic@mau.se</i>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="JN" term="%22Inquiry+%2800469580%29%22">Inquiry (00469580)</searchLink>. 11/14/2025, Vol. 62, p1-13. 13p.
– Name: Subject
  Label: Subject Terms
  Group: Su
  Data: *<searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br />*<searchLink fieldCode="DE" term="%22Decision+making%22">Decision making</searchLink><br />*<searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br />*<searchLink fieldCode="DE" term="%22Research%22">Research</searchLink><br />*<searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br />*<searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br />*<searchLink fieldCode="DE" term="%22Communication%22">Communication</searchLink><br />*<searchLink fieldCode="DE" term="%22Psychology+of+caregivers%22">Psychology of caregivers</searchLink><br />*<searchLink fieldCode="DE" term="%22Caregiver+attitudes%22">Caregiver attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Home+care+services%22">Home care services</searchLink><br /><searchLink fieldCode="DE" term="%22Palliative+treatment%22">Palliative treatment</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Spouses%22">Spouses</searchLink><br /><searchLink fieldCode="DE" term="%22Cancer+patients%22">Cancer patients</searchLink><br /><searchLink fieldCode="DE" term="%22Sound+recordings%22">Sound recordings</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Social+support%22">Social support</searchLink>
– Name: SubjectGeographic
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Croatia%22">Croatia</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>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.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=ehh&AN=189521914
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1177/00469580251392458
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 13
        StartPage: 1
    Subjects:
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Decision making
        Type: general
      – SubjectFull: Experience
        Type: general
      – SubjectFull: Research
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Quality of life
        Type: general
      – SubjectFull: Communication
        Type: general
      – SubjectFull: Psychology of caregivers
        Type: general
      – SubjectFull: Caregiver attitudes
        Type: general
      – SubjectFull: Home care services
        Type: general
      – SubjectFull: Palliative treatment
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Spouses
        Type: general
      – SubjectFull: Cancer patients
        Type: general
      – SubjectFull: Sound recordings
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Social support
        Type: general
      – SubjectFull: Croatia
        Type: general
    Titles:
      – TitleFull: Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Husić, Samir
      – PersonEntity:
          Name:
            NameFull: Miletić, Bojan
      – PersonEntity:
          Name:
            NameFull: Boskovic, Sandra
      – PersonEntity:
          Name:
            NameFull: Jerlekovic, Marica
      – PersonEntity:
          Name:
            NameFull: Friganovic, Adriano
      – PersonEntity:
          Name:
            NameFull: Vejzovic, Vedrana
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 14
              M: 11
              Text: 11/14/2025
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 00469580
          Numbering:
            – Type: volume
              Value: 62
          Titles:
            – TitleFull: Inquiry (00469580)
              Type: main
ResultId 1