This paper examines the value of facilitated telephone and online support groups for palliative care. Telephone interviews were conducted with twenty people living with advanced cancer who had participated in either a telephone or online support group facilitated by the Cancer Council Victoria, Melbourne, Australia. Two dominant participant narratives emerged: a focus on dying with dignity or an interest in deferring discussion of death and dying to focus on the present. Despite the different approaches, participants found the technology-based support groups to be accessible and safe environments in which to discuss difficult topics in privacy. Technology-based strategies provide opportunities for health professionals to provide social and emotional care to more people by moving beyond individualised care and facilitate peer-to-peer support at the end of life, especially to those with specific needs. Such options are feasible for palliative care services to set up and acceptable to a group of clients, especially for younger clients or those socially or geographically isolated. 1. Introduction Like other high-income western countries, Australia has an ageing population and an associated increasing prevalence of cancer. In 2004, fifteen in every thousand Australians had been diagnosed with cancer in the previous five years, and, by 2010, one in two Australian males and one in three females were at risk of a cancer diagnosis before the age of 85 years. While relative survival has increased significantly, changing demographics means the number of deaths from cancer will continue to rise [5]. As in other countries [6], these changes in Australia will have important consequences for the way that health services for people at the end of life are delivered. It is unlikely to be feasible to extend current specialist palliative care to meet the anticipated demand, instead mainstream services need to acquire both skills in palliative care and understanding of the needs of people at this stage of life as part of a broader palliative approach. Recognition of the limits of existing services, both in terms of providing timely access and in meeting future palliative care needs, has prompted Australian governments to adopt and promote a health-promoting approach to palliative care designed to support Australians to live well until they die [7]. In the past, most palliative care support has been directed at individuals and their families, but as people with advanced cancer live longer in the community, more supportive care alternatives are sought. One option is
References
[1]
J. Ussher, L. Kirsten, P. Butow, and M. Sandoval, “What do cancer support groups provide which other supportive relationships do not? the experience of peer support groups for people with cancer,” Social Science and Medicine, vol. 62, no. 10, pp. 2565–2576, 2006.
[2]
P. Klemm, D. Bunnell, M. Cullen, R. Soneji, P. Gibbons, and A. Holecek, “Online cancer support groups: a review of the research literature,” Computers, Informatics, Nursing, vol. 21, no. 3, pp. 136–142, 2003.
[3]
P. N. Butow, L. T. Kirsten, J. M. Ussher, G. V. Wain, M. Sandoval, and K. M. Hobbs, “What is the ideal support group? Views of Australian people with cancer and their carers,” Psycho-Oncology, vol. 16, no. 11, pp. 1039–1045, 2007.
[4]
K. Bell, J. Lee, S. Foran, S. Kwong, and J. Christopherson, “Is there an "ideal cancer" support group? key findings from a qualitative study of three groups,” Journal of Psychosocial Oncology, vol. 28, no. 4, pp. 432–449, 2010.
[5]
Australian Institute of Health and Welfare and Australasian Association of Cancer Registries, Cancer in Australia: An Overview, AIHW, Canberra, Australia, 2010.
[6]
M. Ewers and D. Schaeffer, “Dying in Germany—consequences of societal changes for palliative care and the health care system,” Journal of Public Health, vol. 15, no. 6, pp. 457–465, 2007.
[7]
Department of Health and Ageing, National Palliative Care Strategy 2010: Supporting Australians to Live Well at the End of Life, Department of Health and Ageing, Canberra, Australia, 2011.
[8]
H. F. Hsieh and S. E. Shannon, “Three approaches to qualitative content analysis,” Qualitative Health Research, vol. 15, no. 9, pp. 1277–1288, 2005.
[9]
J. E. Till, “Evaluation of support groups for women with breast cancer: importance of the navigator role,” Health and Quality of Life Outcomes, vol. 1, article 16, 2003.
[10]
R. P. Vilhauer, “‘Them’ and ‘us’: the experiences of women with metastatic disease in mixed-stage versus stage-specific breast cancer support groups,” Psychology and Health, vol. 26, no. 6, pp. 781–797, 2011.
[11]
B. H. Gottlied and E. D. Wachala, “Cancer support groups: a critical review of empirical studies,” Psycho-Oncology, vol. 16, no. 5, pp. 379–400, 2007.
[12]
C. Emslie, F. Whyte, A. Campbell et al., “'I wouldn't have been interested in just sitting round a table talking about cancer'; exploring the experiences of women with breast cancer in a group exercise trial,” Health Education Research, vol. 22, no. 6, pp. 827–838, 2007.
[13]
U. H. Graneheim and B. Lundman, “Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness,” Nurse Education Today, vol. 24, no. 2, pp. 105–112, 2004.
[14]
D. Cohen and B. Crabtree, “Evaluative criteria for qualitative research in health care: controversies and recommendations,” Annals of Family Medicine, vol. 6, no. 4, pp. 331–339, 2008.
[15]
G. M. Leydon, M. Boulton, C. Moynihan et al., “Cancer patients' information needs and information seeking behaviour: in depth interview study,” British Medical Journal, vol. 320, no. 7239, pp. 909–913, 2000.
[16]
L. Sand, M. Olsson, and P. Strang, “Coping strategies in the presence of one's own impending death from cancer,” Journal of Pain and Symptom Management, vol. 37, no. 1, pp. 13–22, 2009.
[17]
M. Patton, Qualitative Research and Evaluation Methods, Sage, Thousand Oaks, Calif, USA, 3rd edition, 2002.
[18]
H. Q. Nguyen, V. Carrieri-Kohlman, S. H. Rankin, R. Slaughter, and M. S. Stulbarg, “Internet-based patient education and support interventions: a review of evaluation studies and directions for future research,” Computers in Biology and Medicine, vol. 34, no. 2, pp. 95–112, 2004.
[19]
J. Ussher, L. Kirsten, P. Butow, and M. Sandoval, “What do cancer support groups provide which other supportive relationships do not? the experience of peer support groups for people with cancer,” Social Science and Medicine, vol. 62, no. 10, pp. 2565–2576, 2006.
[20]
G. R. Tait, C. Schryer, A. McDougall, and L. Lingard, “Exploring the therapeutic power of narrative at the end of life: a qualitative analysis of narratives emerging in dignity therapy,” BMJ Supportive and Palliative Care, vol. 1, no. 1, pp. 296–300, 2011.
[21]
T. F. Hack, L. Carlson, L. Butler et al., “Facilitating the implementation of empirically valid interventions in psychosocial oncology and supportive care,” Supportive Care in Cancer, vol. 19, no. 8, pp. 1097–1105, 2011.
[22]
I. Carlander, B. M. Ternestedt, E. Sahlberg-Blom, I. Hellstr？m, and J. Sandberg, “Being me and being us in a family living close to death at home,” Qualitative Health Research, vol. 21, no. 5, pp. 683–695, 2011.
[23]
A. M. Reb, “Transforming the death sentence: elements of hope in women with advanced ovarian cancer,” Oncology Nursing Forum, vol. 34, no. 6, pp. E70–E81, 2007.
[24]
E. O. Im, W. Chee, H. J. Lim, Y. Liu, E. Guevara, and S. K. Kyung, “Patients' attitudes toward internet cancer support groups,” Oncology Nursing Forum, vol. 34, no. 3, pp. 705–712, 2007.
[25]
P. Salander, T. Bergenheim, and R. Henriksson, “The creation of protection and hope in patients with malignant brain tumours,” Social Science and Medicine, vol. 42, no. 7, pp. 985–996, 1996.
[26]
T. Rust？en, B. A. Cooper, and C. Miaskowski, “The importance of hope as a mediator of psychological distress and life satisfaction in a community sample of cancer patients,” Cancer Nursing, vol. 33, no. 4, pp. 258–267, 2010.
[27]
L. M. Hoey, S. C. Ieropoli, V. M. White, and M. Jefford, “Systematic review of peer-support programs for people with cancer,” Patient Education and Counseling, vol. 70, no. 3, pp. 315–337, 2008.
[28]
K. Rainbird, J. Perkins, R. Sanson-Fisher, I. Rolfe, and P. Anseline, “The needs of patients with advanced, incurable cancer,” British Journal of Cancer, vol. 101, no. 5, pp. 759–764, 2009.
[29]
C. F. Van Uden-Kraan, C. H. C. Drossaert, E. Taal, B. R. Shaw, E. R. Seydel, and M. A. F. J. Van de Laar, “Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia,” Qualitative Health Research, vol. 18, no. 3, pp. 405–417, 2008.
[30]
A. Barak, M. Boniel-Nissim, and J. Suler, “Fostering empowerment in online support groups,” Computers in Human Behavior, vol. 24, no. 5, pp. 1867–1883, 2008.
