Informal caring networks for people at end of life: building social capital in Australian communities

References

• Access Economics Pty Ltd. (2005). The economic value of informal care. Report prepared for Carers Australia. Canberra: Carers Australia.
   Google Scholar
• Aranda, S. K., & Hayman-White, K. (2001). Home caregivers of the person with advanced cancer. Cancer Nursing, 24(4), 300–307. doi: 10.1097/00002820-200108000-00011
   PubMed Web of Science ®Google Scholar
• Australian Bureau of Statistics. (2012). Caring in the community: Australia (Cat no. 4436.0). Canberra: Author.
   Google Scholar
• Australian Institute of Health and Welfare. (2008). Australia's health 2008. Canberra: Author.
   Google Scholar
• Byock, I., Norris, K., Curtis, J. R., & Patrick, D. L. (2001). Improving end-of-life experience and care in the community: a conceptual framework. Journal of Pain and Symptom Management, 22(3), 759–772. doi: 10.1016/S0885-3924(01)00332-3
   PubMed Web of Science ®Google Scholar
• Cancer Council New South Wales & LifeCircle. (2012). Submission in response to ‘Palliative Care NSW policy statement discussion paper’. Retrieved from http://www.cancercouncil.com.au/wp-content/uploads/2012/02/Submission_Palliative-Care_Jan-2012.pdf
   Google Scholar
• Carpentier, N., & Greiner, A. (2012). Successful linkage between formal and informal care systems: the mobilization of outside help by caregivers of persons with Alzheimer's Disease. Qualitative Health Research, 22(10), 1330–1344. doi: 10.1177/1049732312451870
   PubMed Web of Science ®Google Scholar
• Commonwealth of Australia. (2010). Supporting Australians to live well at the end of life: National palliative care strategy 2010. Canberra: Author.
   Google Scholar
• Conway, S. (2008). Public health and palliative care: Principles into practice? Critical Public Health, 18(3), 405–415. doi: 10.1080/09581590802191906
   Google Scholar
• Currow, D. C., Burns, C., Agar, M., Phillips, J., McCaffrey, N., & Abernethy, A. P. (2011). Palliative caregivers who would not take on the caring role again. Journal of Pain and Symptom Management, 41(4), 661–672. doi: 10.1016/j.jpainsymman.2010.06.017
   PubMed Web of Science ®Google Scholar
• Donnelly, S., Michael, N., & Donnelly, C. (2006). Experience of the moment of death at home. Mortality, 11(4), 352–367. doi: 10.1080/13576270600945410
   Google Scholar
• Foreman, L., Hunt, R., Luke, C., & Roder, D. (2006). Factors predictive of preferred place of death in the general population of South Australia. Palliative Medicine, 20, 447–453. doi: 10.1191/0269216306pm1149oa
   PubMed Web of Science ®Google Scholar
• Funk, L., Stajduhar, K., Toye, C., Aoun, S., Grande, G., & Todd, C. (2010). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research 1998-2008. Palliative Medicine, 24(6), 594–607. doi: 10.1177/0269216310371411
   PubMed Web of Science ®Google Scholar
• Gilchrist, A. (2000). The well-connected community: Networking to the ‘edge of chaos’. Community Development Journal, 35, 264–275. doi: 10.1093/cdj/35.3.264
   Google Scholar
• Gomes, B., & Higginson, I. J. (2006). Factors influencing death at home in terminally ill patients with cancer: A systematic review. BMJ Clinical Research, 332(7540), 515–521. doi: 10.1136/bmj.38740.614954.55
   PubMed Web of Science ®Google Scholar
• Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., … Todd, C. (2009). Supporting lay carers in end of life care: Current gaps and future priorities. Palliative Medicine, 23, 339–344. doi: 10.1177/0269216309104875
   PubMed Web of Science ®Google Scholar
• Greene, A., Aranda, S., Tieman, J., Fazekas, B., & Currow, D. C. (2012). Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: Community facilitator pilot. Palliative Medicine, 26(7), 917–923. doi: 10.1177/0269216311421834
   PubMed Web of Science ®Google Scholar
• Halpern, D. (2005). Social capital. Cambridge: Polity Press.
   Google Scholar
• Horsfall, D., Leonard, R., Noonan, K., & Rosenberg, J. 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), 331–336. doi: 10.1179/1743291X12Y.0000000047
   Google Scholar
• Horsfall, D., Noonan, K., & Leonard, R. J. (2012). Bringing our dying home: How caring for someone at end of life builds social capital and develops compassionate communities. Health Sociology Review, 21(4), 373–382. doi: 10.5172/hesr.2012.21.4.373
   Web of Science ®Google Scholar
• Howarth, G. (2007). Death and dying: A sociological introduction. Cambridge: Polity Press.
   Google Scholar
• Hudson, P. (2003). Home-based support for palliative care families: Challenges and recommendations. Medical Journal of Australia, 179, S35–S37.
   PubMed Web of Science ®Google Scholar
• Johansson, S., Leonard, R., & Noonan, K. (2012). Caring and the generation of social capital: Two models for a positive relationship. International Journal of Social Welfare, 21, 44–52. doi: 10.1111/j.1468-2397.2010.00759.x
   Web of Science ®Google Scholar
• Keating, N., & Dosman, D. (2009). Social capital and the care networks of frail seniors. Canadian Review of Sociology, 46(4), 301–318. doi: 10.1111/j.1755-618X.2009.01216.x
   PubMedGoogle Scholar
• Kellehear, A. (1999). Health-promoting palliative care: Developing a social model for practice. Mortality, 4(1), 75–82. doi: 10.1080/713685967
   Google Scholar
• Kellehear, A. (2005). Compassionate cities: Public health and end-of-life care. Oxfordshire, UK: Routledge.
   Google Scholar
• Kellehear, A. (2007). A social history of dying. Cambridge: Cambridge University Press.
   Google Scholar
• Kellehear, A., & O'Connor, D. (2008). Health-promoting palliative care: A practice example. Critical Public Health, 18(1), 111–115. doi: 10.1080/09581590701848960
   Google Scholar
• Kenny, S. (1994). Developing community for the future: Community development in Australia. Melbourne: Thomas Nelson.
   Google Scholar
• Kumar, S. (2007). Kerala, India: A regional community-based palliative care model. Journal of Pain and Symptom Management, 33(5), 623–627. doi: 10.1016/j.jpainsymman.2007.02.005
   PubMed Web of Science ®Google Scholar
• Leonard, R., Horsfall, D., & Noonan, K. (2010). Models of caring from India and Australia and their relationship to social capital. Nepalese Journal of Public Policy and Governance, xxvi(3), 15–25.
   Google Scholar
• Leonard, R., Horsfall, D., & Noonan, K. (2013). Identifying changes in the support networks of end-of-life carers using social network analysis. British Medical Journal Supportive and Palliative Care. doi: 10.1136/bmjspcare-2012-000257 appeared on line 20.11.2013 (Epub ahead of print).
   Google Scholar
• Leonard, R., & Onyx, J. (2003). Networking through loose and strong ties: An Australian qualitative study. Voluntas: International Journal of Voluntary and Nonprofit Organizations, 14(2), 189–203. doi: 10.1023/A:1023900111271
   Google Scholar
• Lewis, J. M., DiGiacomo, M., Luckett, T., Davidson, P. M., & Currow, D. (2013). A social capital framework for palliative care: Supporting health and well-being for people with life-limited illness and their carers through social relations and networks. Journal of Pain and Symptom Management, 45(1), 92–103. doi: 10.1016/j.jpainsymman.2011.12.283
   PubMedGoogle Scholar
• Masucci, L., Guerriere, D. N., Cheng, R., & Coyte, P. C. (2010). Determinants of place of death for recipients of home-based palliative care. Journal of Palliative Care, 26(4), 279–286.
   PubMed Web of Science ®Google Scholar
• Mayer, M., & Rankin, K. (2002). Social capital and community development: A North/South perspective. Antipode, 34(4), 804–808. doi: 10.1111/1467-8330.00273
   Google Scholar
• McNamara, B., & Rosenwax, L. (2010). Which carers of family members at the end of life need more support from health services and why? Social Science and Medicine, 70(7), 1035–1041. doi: 10.1016/j.socscimed.2009.11.029
   PubMed Web of Science ®Google Scholar
• Mills, J., Rosenberg, J. P., & McInerney, F. (2014). Building community capacity for end of life: An investigation of community capacity and its implications for health promoting palliative care in the Australian Capital Territory. Critical Public Health, 15(2), 218–230. DOI: http://dx.doi.org/10.1080/09581596.2014.945396
   Google Scholar
• Noonan, K., Leonard, R., & Horsfall, D. (2011). You can't do that! Researching alternative stories of community participation at end of life. Third Sector Review, 17(1), 75–89.
   Google Scholar
• O'Brien, M., & Jack, B. (2010). Barriers to dying at home: The impact of poor coordination on community service provision for patients with cancer. Health and Social Care in the Community, 18(4), 337–345.
   PubMed Web of Science ®Google Scholar
• Palliative Care Australia. (2004). The hardest thing we have ever done: The social impact of caring for terminally ill people in Australia. Canberra: Author.
   Google Scholar
• Palliative Care Australia. (2005). Standards for providing quality palliative care for all Australians. Canberra: Author.
   Google Scholar
• Palliative Care Australia. (2010). Health system reform and care at the end of life: A guidance document. Canberra: Author.
   Google Scholar
• Palliative Care Australia. (2011). We need to talk about dying – Survey (media release). Ret. Nov2013. Retrieved from http://www.palliativecare.org.au/Portals/46/National%20Palliative%20Care%20Week%20Media%20release.pdf
   Google Scholar
• Putnam, R. (1993). Making democracy work: Civic traditions in modern Italy. Princeton, NJ: Princeton University Press.
   Google Scholar
• Putnam, R. (2000). Bowling alone: The collapse and revival of American community. New York: Simon & Schuster.
   Google Scholar
• Ray, R. A., & Street, A. F. (2005). Who's there and who cares: Age as an indicator of social support networks for caregivers among people living with motor neurone disease. Health & Social Care in the Community, 13(6), 542–552. doi: 10.1111/j.1365-2524.2005.00586.x
   PubMedGoogle Scholar
• Rosenberg, J. (2011). Whose business is dying? Death, the home and palliative care. Cultural Studies Review, 17(1), 15–30. doi: 10.5130/csr.v17i1.1971
   Google Scholar
• Rosenberg, J. P., & Yates, P. M. (2010). Health promotion in palliative care: The case for conceptual congruence. Critical Public Health, 20(2), 201–210. doi: 10.1080/09581590902897394
   Web of Science ®Google Scholar
• Rumbold, B. (2010). Health promoting palliative care and dying in old age. In M. Gott & C. Ingleton (Eds.), Living with ageing and dying. Oxford, UK: Open University Press, pp. 79–85.
   Google Scholar
• Salau, S., Rumbold, B., & Young, B. (2007). From concept to care: Enabling community care through a health promoting palliative care approach. Contemporary Nurse, 27, 132–140. doi: 10.5172/conu.2007.27.1.132
   PubMed Web of Science ®Google Scholar
• Sallnow, L., Kumar, S., & Kellehear, A. (2012). International perspectives on public health and palliative care. Oxford, UK: Routledge.
   Google Scholar
• Stajduhar, K. I., Funk, L., Toye, C., Grande, G. E., Aoun, S., & Todd, C. J. (2010). Part 1: Home-based family caregiving at the end of life: A comprehensive review of pulished quantitative research (1998-2008). Palliative Medicine, 24, 573–593. doi: 10.1177/0269216310371412
   PubMed Web of Science ®Google Scholar
• Stjernsward, J. (2007). Palliative care: The public health strategy. Journal of Public Health Policy, 28, 42–55. doi: 10.1057/palgrave.jphp.3200115
   PubMed Web of Science ®Google Scholar
• Street, A. F. (2007). Leading the way: Innovative health promoting palliative care. Contemporary Nurse, 27, 104–106. doi: 10.5172/conu.2007.27.1.104
   PubMed Web of Science ®Google Scholar
• Tang, S. (2003). When death is imminent: Where terminally ill patients with cancer prefer to die and why. Cancer Nursing, 26(3), 245–251. doi: 10.1097/00002820-200306000-00012
   PubMed Web of Science ®Google Scholar
• Thomas, K., Hudson, P., Oldham, L., Kelly, B., & Trauer, T. (2010). Meeting the needs of family carers: An evaluation of three home-based palliative care services in Australia. Palliative Medicine, 24(2), 183–191. doi: 10.1177/0269216309351467
   PubMed Web of Science ®Google Scholar
• Weibull, A., Olsen, F., & Neergaard, M. (2008). Caregivers’ active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study. BMC Palliative Care, 7(15), 1–8.
   PubMedGoogle Scholar
• White, K. (2007). Rural palliative care: Exploration of the pivotal role of primary healthcare providers. Cancer Forum, 31(1), 22–25.
   Google Scholar
• Zapart, S., Kenny, P., Hall, J., Servic, B., & Wiley, S. (2007). Home-based palliative care in Sydney, Australia: The carer's perspective on the provision of informal care. Health and Social Care in the Community, 15(2), 97–107.
   PubMedGoogle Scholar