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Carer experience of end-of-life service provision: a social network analysis
journal contributionposted on 2021-01-14, 05:02 authored by R Leonard, D Horsfall, John RosenbergJohn Rosenberg, K Noonan
© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2020. Objective To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. Methods Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. Results Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower. Conclusion The results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care.
This project was funded by the Australian Research Council, the Cancer Council of NSW, the Western Sydney University and the CSIRO.
JournalBMJ Supportive and Palliative Care
PublisherBMJ PUBLISHING GROUP
Rights StatementThe Author reserves all moral rights over the deposited text and must be credited if any re-use occurs. Documents deposited in OPAL are the Open Access versions of outputs published elsewhere. Changes resulting from the publishing process may therefore not be reflected in this document. The final published version may be obtained via the publisher’s DOI. Please note that additional copyright and access restrictions may apply to the published version.
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Science & TechnologyLife Sciences & BiomedicineHealth Care Sciences & Servicesterminal caremethodological researchhome caresocial caresupportive carePALLIATIVE CARECARING NETWORKSHOMEPEOPLENEEDSHumansTerminal CareFocus GroupsQualitative ResearchSocial SupportAdultAgedMiddle AgedCaregiversFemaleMaleSocial Networking