What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities.

OBJECTIVE To explore the role of online communities from the perspective of breast cancer survivors who are facilitators of face-to-face support groups. METHODS Seventy-three attendees (73% response rate) of a Canadian support group-training program completed a questionnaire examining when and why they used online communities. A purposive sample of 12 respondents was interviewed on how they used them in comparison to traditional supportive care. Survey responses were analyzed using descriptive statistics, and interview transcripts using a descriptive interpretive approach. RESULTS Online communities were used by 31.5%, mostly during treatment (73.9%), daily or weekly (91.3%), primarily for information (91.3%) and symptom management (69.6%) and less for emotional support (47.8%). Reasons for non-use were lack of need (48.0%), self-efficacy (30.0%), trust (24.0%), and awareness (20.0%). Respondents used online communities to address unmet needs during periods of stress and uncertainty. A multi-theory framework helps to explain the conditions influencing their use. CONCLUSION Online communities have the potential to fill gaps in supportive care by addressing the unmet needs of a subgroup of breast cancer survivors. Further research is required among typical cancer survivors. PRACTICE IMPLICATIONS Online communities could play an important role as a supplemental resource for a sub-group of breast cancer survivors.

[1]  B. F. Sharf.  Communicating breast cancer on-line: support and empowerment on the Internet. , 1997, Women & health.

[2]  E. Guba,et al.  Lincoln, Yvonna, and Egon Guba, "Postpositivism and the Naturalist Paradigm," pp. 14-46 in Yvonna Lincoln and Egon Guba, Naturalistic Inquiry . Beverly Hills, CA: Sage, 1985.* , 1985 .

[3]  C. V. van Uden-Kraan,et al.  Health-related Internet use by patients with somatic diseases: Frequency of use and characteristics of users , 2009, Informatics for health & social care.

[4]  Hsiu-Fen Lin,et al.  Understanding Behavioral Intention to Participate in Virtual Communities , 2006, Cyberpsychology Behav. Soc. Netw..

[5]  Kevin B. Wright,et al.  Health-related Support Groups on the Internet: Linking Empirical Findings to Social Support and Computer-mediated Communication Theory , 2003, Journal of health psychology.

[6]  Kazuhiro Nakayama,et al.  Comparing support to breast cancer patients from online communities and face-to-face support groups. , 2011, Patient education and counseling.

[7]  J. Powell,et al.  Primary care Health related virtual communities and electronic support groups : systematic review of the effects of online peer to peer interactions , 2004 .

[8]  Qimei Chen,et al.  Internet Community Group Participation: Psychosocial Benefits for Women with Breast Cancer , 2005, J. Comput. Mediat. Commun..

[9]  L. Hoey,et al.  Systematic review of peer-support programs for people with cancer. , 2008, Patient education and counseling.

[10]  P. Butow,et al.  Sustaining Leaders of Cancer Support Groups , 2006, Social work in health care.

[11]  S. Ziebland,et al.  What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. , 2004, Patient education and counseling.

[12]  B. Lundman,et al.  Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. , 2004, Nurse education today.

[13]  M. Patton.  Qualitative research and evaluation methods , 1980 .

[14]  Bret R. Shaw,et al.  Experiences of Women with Breast Cancer: Exchanging Social Support over the CHESS Computer Network , 2000, Journal of health communication.

[15]  Mitch Golant,et al.  Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors , 2009, Psycho-oncology.

[16]  M. T. Høybye,et al.  Online interaction. Effects of storytelling in an internet breast cancer support group , 2005, Psycho-oncology.

[17]  Carol E Golin,et al.  How New Subscribers Use Cancer-Related Online Mailing Lists , 2005, Journal of medical Internet research.

[18]  What is the ideal support group? Views of Australian people with cancer and their carers , 2007, Psycho-oncology.

[19]  P. Butow,et al.  Breast cancer survivors’ supportive care needs 2–10 years after diagnosis , 2007, Supportive Care in Cancer.

[20]  M. Denniston,et al.  Health status and life satisfaction among breast cancer survivor peer support volunteers , 2002, Psycho-oncology.

[21]  E. Katz,et al.  The Uses of Mass Communications: Current Perspectives on Gratifications Research. Sage Annual Reviews of Communication Research Volume III. , 1975 .

[22]  Peter A. Todd,et al.  Understanding Information Technology Usage: A Test of Competing Models , 1995, Inf. Syst. Res..

[23]  J. L. Bender,et al.  The Web of Care: A Multi-method Study Examining the Role of Online Communities as a Source of Peer-to-peer Supportive Care for Breast Cancer Survivors , 2012 .

[24]  S. Ziebland,et al.  Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health? , 2012, The Milbank quarterly.

[25]  R. P. Vilhauer,et al.  A qualitative study of the experiences of women with metastatic breast cancer , 2008, Palliative and Supportive Care.

[26]  K. Wright.  Social support within an on-line cancer community: an assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective , 2002 .

[27]  Matthew B. Miles,et al.  Qualitative Data Analysis: An Expanded Sourcebook , 1994 .

[28]  F. Griffiths,et al.  Why Are Health Care Interventions Delivered Over the Internet? A Systematic Review of the Published Literature , 2006, Journal of medical Internet research.

[29]  Shelley E. Taylor.  Adjustment to threatening events: A theory of cognitive adaptation. , 1983 .

[30]  F. Mullan.  Seasons of survival: reflections of a physician with cancer. , 1985, The New England journal of medicine.

[31]  Benjamin A. Goldstein,et al.  Self-help On-line: An Outcome Evaluation of Breast Cancer Bulletin Boards , 2005, Journal of health psychology.

[32]  M. T. Høybye,et al.  Online interaction. Effects of storytelling in an internet breast cancer support group , 2005 .

[33]  B. Rimer,et al.  How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists , 2007, Journal of medical Internet research.

[34]  H Sharon Campbell,et al.  Cancer peer support programs-do they work? , 2004, Patient education and counseling.

[35]  M. Bernstein,et al.  Information gaps for patients requiring craniotomy for benign brain lesion: a qualitative study , 2009, Journal of Neuro-Oncology.

[36]  B. Gottlieb,et al.  Cancer support groups: a critical review of empirical studies , 2007, Psycho-oncology.

[37]  M. Roland,et al.  What Predicts Patients' Interest in the Internet as a Health Resource in Primary Care in England? , 2003 .

[38]  Bret R. Shaw,et al.  Empowering Processes and Outcomes of Participation in Online Support Groups for Patients With Breast Cancer, Arthritis, or Fibromyalgia , 2008, Qualitative health research.

[39]  Anne-Grete Sandaunet,et al.  The challenge of fitting in: non-participation and withdrawal from an online self-help group for breast cancer patients. , 2008, Sociology of health & illness.

[40]  S. E. Taylor,et al.  Social comparison activity under threat: downward evaluation and upward contacts. , 1989, Psychological review.

[41]  K. Wright,et al.  Perceptions of on‐line support providers: An examination of perceived homophily, source credibility, communication and social support within on‐line support groups , 2000 .

[42]  Sun Young Lee,et al.  Why Do Patients Seek an Alternative Channel? The Effects of Unmet Needs on Patients' Health-Related Internet Use , 2010, Journal of health communication.

[43]  I. Ajzen.  The theory of planned behavior , 1991 .

[44]  M. Fitch,et al.  Supportive care for cancer patients. , 2000, Hospital quarterly.

[45]  V. Strecher.  Internet methods for delivering behavioral and health-related interventions (eHealth). , 2007, Annual review of clinical psychology.

[46]  J. Owen,et al.  Internet Support and Information for Women with Breast Cancer , 2002 .

[47]  Fred D. Davis.  Perceived Usefulness, Perceived Ease of Use, and User Acceptance of Information Technology , 1989, MIS Q..

[48]  D. Gustafson,et al.  Effect of computer support on younger women with breast cancer , 2001, Journal of General Internal Medicine.

[49]  Ben-Tzion Karsh,et al.  Toward a theoretical approach to medical error reporting system research and design. , 2006, Applied ergonomics.

[50]  L. Festinger.  A Theory of Social Comparison Processes , 1954 .

[51]  C. B. Taylor,et al.  Evaluation of an internet support group for women with primary breast cancer , 2003, Cancer.

[52]  J. Pennebaker,et al.  Who talks? The social psychology of illness support groups. , 2000, The American psychologist.