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The needs of family caregivers providing palliative home care in Portugal: a multi-stage mixed methods study protocol

2025-06-02Journal article Open access
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dc.contributor.authorLaranjeira, Carlos
dc.contributor.authorDixe, Maria dos Anjos
dc.contributor.authorCoelho, Alexandra
dc.contributor.authorReigada, Carla
dc.contributor.authorCarneiro, Rui
dc.contributor.authorQuerido, Ana
dc.contributor.editorAna
dc.date.accessioned2025-09-29T11:04:31Z
dc.date.available2025-09-29T11:04:31Z
dc.date.issued2025-06-02
dc.descriptionThis article is part of the Research Topic Ensuring Public Health: The Active Role of Healthcare Professionals
dc.descriptionArticle number - 1596657
dc.description.abstractackground: In palliative care (PC), family caregivers (FCs) play an important role in managing patient symptoms and addressing patient needs. In end-oflife (EoL), FCs frequently experience distress that exacerbates emotional strain and complicates grieving. Training FCs to care for palliative patients should be implemented urgently, enhancing their preparation, reducing their burden, and assuring Quality of Life (QoL) throughout illness progression. Recent research has highlighted a global shift toward death in the community, in line with patient preferences. In contrast, the Portuguese reality reveals a tendency to die in hospitals and an absence of community PC and support for FCs, a model that might not be sustainable in the future. Aims: The overall aim of this study is to comprehensively assess the unmet needs of FCs in home-based PC settings and their experiences interacting with PC services, and to propose strategies and recommendations for FC advocacy in PC. Methods: A multi-stage mixed-methods design will be used, divided into four main phases. Phase I will identify unmet needs and profile FCs through a quantitative cross-sectional analysis of a nationally representative sample. Phase II will develop a qualitative study to understand the role and impact of FCs providing PC and their experiences with support from PC services. This will help generate ideas for more accessible and sustainable PC-in-place. Phase III will comprise a multi-phased, consensus-based approach to identify priority areas of need, as decided by FCs and professionals, and develop a short Caregivers Assessment Tool (CAT). Lastly, phase IV will synthesize the results and produce a white book for FC advocacy in PC. Discussion: The project will enrich community PC while optimizing social welfare activities. By identifying the unmet requirements of FCs of PC patients, the initiative will enhance the QoL and well-being of the care recipients, respecting their preferences, while improving the health and competence of FCs, and minimizing the consumption of hospital resources. Lastly, FC engagement should be coordinated and sustainably executed through the participation of relevant all stakeholderseng
dc.description.sponsorshipThe author(s) declare that financial support was received for the research and/or publication of this article. The study has received funding under the project 2023.15123.PEX “ALL ABOARD: Access family caregiving needs as a bridge for palliative care-in-place,” funded by FCT-Fundação para a Ciência e a Tecnologia. It was also supported by FCT-Fundação para a Ciência e a Tecnologia I.P. (UIDB/05704/2020 and UIDP/05704/2020); and by the Scientific Employment Stimulus—Institutional Call—(https://doi.org/10.54499/CEECINST/00051/2018/CP1566/CT0012, accessed on 20 April 2025). The funders had no role in the design of the study, in the collection, analysis, or interpretation of data, in the writing of the manuscript, or in the decision to publish the results.
dc.identifier.citationLaranjeira C, Dixe MdA, Coelho A, Reigada C, Carneiro R and Querido A (2025) The needs of family caregivers providing palliative home care in Portugal: a multi-stage mixed methods study protocol. Front. Public Health. 13:1596657. doi: 10.3389/fpubh.2025.1596657
dc.identifier.doi10.3389/fpubh.2025.1596657
dc.identifier.eissn2296-2565
dc.identifier.urihttp://hdl.handle.net/10400.8/14142
dc.language.isoeng
dc.peerreviewedyes
dc.publisherFrontiers Media
dc.relationCenter for Innovative Care and Health Technology
dc.relation.hasversionhttps://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2025.1596657/full
dc.relation.ispartofFrontiers in Public Health
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.subjectAdvocacy
dc.subjectCommunity support
dc.subjectFamily caregivers
dc.subjectMixed methods
dc.subjectPalliative care
dc.subjectPortugal
dc.subjectNeeds assessment
dc.titleThe needs of family caregivers providing palliative home care in Portugal: a multi-stage mixed methods study protocoleng
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleCenter for Innovative Care and Health Technology
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB%2F05704%2F2020/PT
oaire.citation.titleFrontiers in Public Health
oaire.citation.volume13
oaire.fundingStream6817 - DCRRNI ID
oaire.versionhttp://purl.org/coar/version/c_970fb48d4fbd8a85
person.familyNameLaranjeira
person.familyNameDixe
person.familyNameQuerido
person.givenNameCarlos
person.givenNameMaria dos Anjos
person.givenNameAna
person.identifier794059
person.identifier.ciencia-idDB15-BD76-2B75
person.identifier.ciencia-idE311-0BBA-444F
person.identifier.orcid0000-0003-1080-9535
person.identifier.orcid0000-0001-9035-8548
person.identifier.orcid0000-0002-5021-773X
person.identifier.ridB-9257-2018
person.identifier.scopus-author-id22957802900
person.identifier.scopus-author-id55885797900
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
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relation.isAuthorOfPublication591800d1-2c83-4227-af0a-b330a0acebac
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