Working together-apart : exploring the relationships between formal and informal care networks for people dying at home

Horsfall, Debbie, Leonard, Rosemary, Noonan, Kerrie, & Rosenberg, John P. (2013) Working together-apart : exploring the relationships between formal and informal care networks for people dying at home. Progress in Palliative Care, 21(6), pp. 331-336.

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Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together.

Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants.

Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice.

Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

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ID Code: 69003
Item Type: Journal Article
Refereed: Yes
Keywords: Care networks, Health-promoting palliative care, Home death
DOI: 10.1179/1743291X12Y.0000000047
ISSN: 0969-9260
Subjects: Australian and New Zealand Standard Research Classification > MEDICAL AND HEALTH SCIENCES (110000) > NURSING (111000) > Nursing not elsewhere classified (111099)
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Schools > School of Nursing
Copyright Owner: Copyright 2013 W. S. Maney & Son Ltd
Deposited On: 20 Mar 2014 23:19
Last Modified: 24 Mar 2014 00:24

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