Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal

葡萄牙居家非正式姑息治疗:一项针对姑息治疗专业人员的焦点小组研究

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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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