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Published VersionCC BY V4.0, Open Access
Journal article
Exploring the ‘citizen organization’: an evaluation of a regional Australian community-based palliative care service model
Palliative Care and Social Practice, Vol.18, pp.1-15
2024
Appears in UniSC Supported Open Access Outputs
Abstract
Background:
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’.
Objectives:
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.
Design:
A co-designed evaluation approach utilizing mixed-method design is used.
Methods:
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.
Results:
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.
Conclusion:
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.
Details
- Title
- Exploring the ‘citizen organization’: an evaluation of a regional Australian community-based palliative care service model
- Authors
- John Rosenberg (Corresponding Author) - University of the Sunshine Coast, Queensland, School of Health - NursingTrudi Flynn (Author) - University of the Sunshine Coast, Queensland, School of Law and SocietyKatharina Merollini (Author) - University of the Sunshine Coast, Queensland, School of Health - Public HealthJosie Linn (Author) - University of the Sunshine Coast, Queensland, School of Law and SocietyDoreen Nabukalu (Author) - University of the Sunshine Coast, Queensland, School of HealthCindy Davis (Author) - University of the Sunshine Coast, Queensland, School of Law and Society
- Publication details
- Palliative Care and Social Practice, Vol.18, pp.1-15
- Publisher
- Sage Publications Ltd.
- Date published
- 2024
- DOI
- 10.1177/26323524241260427
- ISSN
- 2632-3524
- Copyright note
- © The Author(s), 2024. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
- Organisation Unit
- Healthy Ageing Research Cluster; School of Health - Nursing; Cancer Research Cluster; School of Law and Society; School of Health - Public Health
- Language
- English
- Record Identifier
- 991038198202621
- Output Type
- Journal article
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