{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T16:31:03Z","timestamp":1753893063211,"version":"3.41.2"},"reference-count":52,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2025,6,2]],"date-time":"2025-06-02T00:00:00Z","timestamp":1748822400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>In palliative care (PC), family caregivers (FCs) play an important role in managing patient symptoms and addressing patient needs. In end-of-life (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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aims<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>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 stakeholders.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fpubh.2025.1596657","type":"journal-article","created":{"date-parts":[[2025,6,2]],"date-time":"2025-06-02T05:22:25Z","timestamp":1748841745000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":1,"title":["The needs of family caregivers providing palliative home care in Portugal: a multi-stage mixed methods study protocol"],"prefix":"10.3389","volume":"13","author":[{"given":"Carlos","family":"Laranjeira","sequence":"first","affiliation":[]},{"given":"Maria dos Anjos","family":"Dixe","sequence":"additional","affiliation":[]},{"given":"Alexandra","family":"Coelho","sequence":"additional","affiliation":[]},{"given":"Carla","family":"Reigada","sequence":"additional","affiliation":[]},{"given":"Rui","family":"Carneiro","sequence":"additional","affiliation":[]},{"given":"Ana","family":"Querido","sequence":"additional","affiliation":[]}],"member":"1965","published-online":{"date-parts":[[2025,6,2]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"671","DOI":"10.20344\/amp.21838","article-title":"Palliative Care in Portugal: are we \u201cchoosing wisely\u201d?","volume":"37","author":"Rol\u00e3o","year":"2024","journal-title":"Acta Med Port"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"225","DOI":"10.1186\/s12904-024-01556-7","article-title":"Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study","volume":"23","author":"da Silva","year":"2024","journal-title":"BMC Palliat Care"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"84","DOI":"10.1136\/bmjspcare-2015-000878","article-title":"The importance of identifying preferred place of death","volume":"9","author":"Ali","year":"2019","journal-title":"BMJ Support Palliat Care"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"43","DOI":"10.1186\/s12904-021-00736-z","article-title":"Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients","volume":"20","author":"Nilsson","year":"2021","journal-title":"BMC Palliat Care"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1186\/s12904-024-01350-5","article-title":"Family caregivers\u2019 preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home \u2013 a grounded theory study","volume":"23","author":"Nysaeter","year":"2024","journal-title":"BMC Palliat Care"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"1518","DOI":"10.1016\/j.pec.2020.03.012","article-title":"A systematic review of interventions for family caregivers who care for patients with advanced cancer at home","volume":"103","author":"Ahn","year":"2020","journal-title":"Patient Educ Couns"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"1915","DOI":"10.3390\/healthcare12191915","article-title":"Preparedness for caregiving role and telehealth use to provide informal palliative home Care in Portugal: a qualitative study","volume":"12","author":"Caetano","year":"2024","journal-title":"Healthcare (Basel, Switzerland)"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"978","DOI":"10.3390\/healthcare13090978","article-title":"Informal palliative Care at Home: a focus group study among professionals working in palliative Care in Portugal","volume":"13","author":"Marrazes","year":"2025","journal-title":"Healthcare"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"428","DOI":"10.1111\/hsc.12219","article-title":"Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada","volume":"24","author":"Guerriere","year":"2016","journal-title":"Health Soc Care Community"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/1472-684X-13-16","article-title":"Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs","volume":"13","author":"De Korte-Verhoef","year":"2014","journal-title":"BMC Palliat Care"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"1975","DOI":"10.1007\/s00520-015-2987-z","article-title":"Informal caregivers of advanced-stage cancer patients: every second is at risk for psychiatric morbidity","volume":"24","author":"Rumpold","year":"2016","journal-title":"Support Care Cancer"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"1513","DOI":"10.1002\/cncr.29223","article-title":"When do we need to care about the caregiver? 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