{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T22:59:59Z","timestamp":1793141999824,"version":"4.5.0"},"reference-count":49,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["INQUIRY"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:p>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\u2019s 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\u2019 experiences. Analysis revealed one overarching theme, \u201cStill Invisible but Essential,\u201d and 2 major themes: \u201cConfronting the reality of an incurable cancer diagnosis\u201d and \u201cFacing the paradox \u2013 choosing between length and quality of life,\u201d 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.<\/jats:p>","DOI":"10.1177\/00469580251392458","type":"journal-article","created":{"date-parts":[[2025,11,14]],"date-time":"2025-11-14T17:16:36Z","timestamp":1763140596000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":6,"title":["Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care"],"prefix":"10.1177","volume":"62","author":[{"given":"Samir","family":"Husi\u0107","sequence":"first","affiliation":[{"name":"Primorsko Goranska County Health Center, Rijeka, Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bojan","family":"Mileti\u0107","sequence":"additional","affiliation":[{"name":"University of Rijeka, Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Boskovic","sequence":"additional","affiliation":[{"name":"University of Rijeka, Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marica","family":"Jerlekovic","sequence":"additional","affiliation":[{"name":"University of Applied Health Sciences Zagreb, Croatia"},{"name":"University Hospital Centre Sisters of Mercy, Zagreb, Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adriano","family":"Friganovic","sequence":"additional","affiliation":[{"name":"University of Rijeka, Croatia"},{"name":"University of Applied Health Sciences Zagreb, Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0690-3940","authenticated-orcid":false,"given":"Vedrana","family":"Vejzovic","sequence":"additional","affiliation":[{"name":"University of Malm\u00f6, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,11,14]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-020-00558-5"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph19020821"},{"key":"e_1_3_4_4_2","volume-title":"Informal care in Europe \u2013 Exploring formalisation, availability and quality","author":"European Commission: Directorate-General for Employment, Social Affairs and Inclusion, London School of Economics and Political Science (LSE)","year":"2018","unstructured":"European Commission: Directorate-General for Employment, Social Affairs and Inclusion, London School of Economics and Political Science (LSE), Zigante V. Informal care in Europe \u2013 Exploring formalisation, availability and quality. Publications Office; 2018."},{"issue":"5","key":"e_1_3_4_5_2","first-page":"238","article-title":"EAPC Task Force on Family Carers White Paper on improving support for family carers in palliative care: part 1","volume":"17","author":"Payne S","year":"2010","unstructured":"Payne S. EAPC Task Force on Family Carers White Paper on improving support for family carers in palliative care: part 1. Eur J Palliat Care. 2010;17(5):238-245.","journal-title":"Eur J Palliat Care"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-015-0010-6"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(18)30415-7"},{"key":"e_1_3_4_8_2","unstructured":"World Health Organization. Palliative care. 2020. 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Care for carers: an investigation on family caregivers\u2019 needs, tasks, and experiences. Transl Med UniSa. 2019;19:54-59.","journal-title":"Transl Med UniSa"},{"key":"e_1_3_4_16_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2017.05.014"},{"key":"e_1_3_4_17_2","doi-asserted-by":"publisher","DOI":"10.1002\/pon.5800"},{"key":"e_1_3_4_18_2","unstructured":"Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences Engineering and Medicine; Schulz R Eden J. 3 Family Caregiving Roles and Impacts. Families Caring for an Aging America. 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