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Carer experience of end-of-life service provision: a social network analysis
  1. Rosemary Leonard1,
  2. Debbie Horsfall1,
  3. John Rosenberg2 and
  4. Kerrie Noonan1,3
  1. 1School of Social Science and Psychology, Western Sydney University, Sydney, New South Wales, Australia
  2. 2Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
  3. 3School of Social Sciences & Psychology, Western Sydney University and Palliative Care, Liverpool Hospital, Sydney, New South Wales, Australia
  1. Correspondence to Professor Rosemary Leonard, School of Social Sciences & Psychology, Western Sydney University, Penrith, NSW 2751, Australia; r.leonard{at}westernsydney.edu.au

Abstract

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.

  • terminal care
  • methodological research
  • home care
  • social care
  • supportive care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors RL: the first author has the expertise in SNA. She designed the SNA data collection conducted the analysis and led the write-up of the study. DH leads the research project and was involved in the design, data collection, qualitative analysis and writing up of the study. KN instigated the research and was involved in the design, data collection, qualitative analysis and writing up of the study. JR provided expertise on service providers and was involved in the data collection, qualitative analysis and writing up of this study.

  • Funding This project was funded by the Australian Research Council, the Cancer Council of NSW, the Western Sydney University and the CSIRO.

  • Competing interests None declared.

  • Ethics approval Approval for the project was obtained from the University of Western Sydney Human Research Ethics Committee (Approval No. H9255).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Because this is an in-depth relatively small-scale, largely qualitative study, the ethics approval does not allow data sharing.

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