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Exploring the 'citizen organization': an evaluation of a regional Australian community-based palliative care service model.
Rosenberg, John; Flynn, Trudi; Merollini, Katharina; Linn, Josie; Nabukalu, Doreen; Davis, Cindy.
Afiliación
  • Rosenberg J; University of the Sunshine Coast, Tallon Street, Caboolture, QLD 4510, Australia.
  • Flynn T; School of Law and Society, University of the Sunshine Coast, Sippy Downs, QLD, Australia.
  • Merollini K; School of Health, University of the Sunshine Coast, Sippy Downs, QLD, Australia.
  • Linn J; School of Health, University of the Sunshine Coast, Sippy Downs, QLD, Australia.
  • Nabukalu D; School of Health, University of the Sunshine Coast, Petrie, QLD, Australia.
  • Davis C; School of Law and Society, University of the Sunshine Coast, Sippy Downs, QLD, Australia.
Palliat Care Soc Pract ; 18: 26323524241260427, 2024.
Article en En | MEDLINE | ID: mdl-39045293
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.
'Citizen organization' an Australian community-based palliative care service model Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. It aims 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 in equal partnerships between civic organizations, community members, patients and carers, and service providers. We undertook an evaluation of Little Haven's model of care by speaking with current patients, current and past carers, staff, volunteers and stakeholders about their experiences of Little Haven. We found that Little Haven's model contains the essential elements of a palliative care service and provides early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users. They have strong community engagement with a strong background in community activism. We identified that Little Haven's 'being in the community' goes beyond service provision or even sentiment. We observed a symbiotic relationship between the organization and the community it supports in what we have termed the 'citizen organization'. The distinctive characteristic of the citizen organization is its inseparability from the community in which it dwells.
Palabras clave

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Palliat Care Soc Pract Año: 2024 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Palliat Care Soc Pract Año: 2024 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Estados Unidos