Rosenberg John, Flynn Trudi, Merollini Katharina, Linn Josie, Nabukalu Doreen, Davis Cindy
University of the Sunshine Coast, Tallon Street, Caboolture, QLD 4510, Australia.
School of Law and Society, University of the Sunshine Coast, Sippy Downs, QLD, Australia.
Palliat Care Soc Pract. 2024 Jun 24;18:26323524241260427. doi: 10.1177/26323524241260427. eCollection 2024.
Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'.
This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services.
A co-designed evaluation approach utilizing mixed-method design is used.
Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated.
This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community.
All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.
小港湾是澳大利亚金皮的一家基于社区的农村专科姑息治疗服务机构。其目标是为那些正在经历或预期会患重病及面临生命损失的人提供最高质量的护理、支持和教育。家庭和社区与临床服务协同工作，社区参与影响着对临终者及其家人和社区的关怀护理与支持。公共卫生姑息治疗通过基于社区的姑息治疗服务促进社区参与，其基础是公民生活、社区成员、患者及护理人员与服务提供者之间的平等伙伴关系。这有多种形式，包括我们所称的“公民组织”。
本文报告了对小港湾护理模式的评估，并探讨该组织作为其所服务社区的“公民”的地位。
采用混合方法设计的共同设计评估方法。
多个数据源从广泛角度获取了护理模式的信息，包括来自当前患者、当前护理人员、工作人员、志愿者和组织利益相关者的主要定性数据（访谈和焦点小组）；以及来自丧亲护理人员的二级定量调查数据。进行了主题分析和描述性统计。
这种护理模式展示了一些常见的服务要素，包括让使用者能够以很少或无需付费的方式尽早获得全面的、以患者/家庭为中心的专科姑息治疗，同时社区参与度很高。这些要素为患者和护理人员提供了高质量护理，他们将这种支持描述为“超乎寻常”，使在家中能有良好的生活质量和护理。工作人员和志愿者认为该模式内在的灵活性对其成效至关重要；服务与社区之间的接口同样被强调为关键服务要素。组织利益相关者将该模式视为地方行动主义的产物以及对社区负责的体现。
所有参与群体都认为该服务模式能够提供优质护理。将社区姑息治疗服务构建为公民组织是一个新概念。
