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Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal
Vanessa Marrazes1, Laura Gonçalves2, Ana Querido1,3,4
1School of Health Sciences, Campus 2, Polytechnic University of Leiria, Morro do Lena, Alto do Vieiro, Apartado 4137, 2411-901 Leiria, Portugal.
Abstract:
Background/Objectives: Informal caregivers (ICs) are the backbone of home-based palliative care (PC) because they play a vital role in offering more seamless and timely support, preventing suffering and fostering comfort and dignity. Specialized home-based PC teams must recognize ICs' unmet needs in fulfilling daily responsibilities and enhance their preparedness for caring. In this vein, this study aimed to carry out the following: (a) explore how PC professionals perceive the preparedness of ICs to provide PC at home and (b) determine what barriers and enablers they consider essential for the delivery of high-quality PC at home. Methods: Using purposeful sampling, thirty-four professionals from four disciplines who worked in specialized PC teams were recruited for a descriptive qualitative research study. Four focus group discussions were conducted from September 2024 to January 2025. This was followed by a thematic analysis according to Braun and Clarke's framework. The findings are reported following the COREQ checklist. Results: Most of the participants were female nurses (n = 22) with a mean age of 41.8 ± 8.62 years. Three overarching themes were identified: (1) IC needs and motivations for providing care; (2) perceived barriers to good-quality palliative home care; and (3) perceived enablers of good-quality palliative home care. The IC's preparedness depends on personal characteristics, health status, the scope of tasks, and the ramifications stemming from the complexity of the illness trajectory. Conclusions: Professionals deemed it essential for PC staff to be experienced, accessible, person-centered, and proactive. Furthermore, effective communication and a well-defined network for requesting certain community resources or services were deemed crucial for delivering high-quality PC at home.
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