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Evaluation of an internet support group for women with primary breast cancer
Open accessAbstract
BACKGROUND: Women with breast carcinoma commonly experience psychologic distress following their diagnosis. Women who participate in breast cancer support groups have reported significant reduction in their psychologic distress and pain and improvement in the quality of their lives. Web‐based breast cancer social support groups are widely used, but little is known of their effectiveness. Preliminary evidence suggests that women benefit from their participation in web‐based support groups. METHODS: Seventy‐two women with primary breast carcinoma were assigned randomly to a 12‐week, web‐based, social support group (Bosom Buddies). The group was semistructured, moderated by a health care professional, and delivered in an asynchronous newsgroup format. RESULTS: The results indicate that a web‐based support group can be useful in reducing depression and cancer‐related trauma, as well as perceived stress, among women with primary breast carcinoma. The effect sizes ranged from 0.38 to 0.54. Participants perceived a variety of benefits and high satisfaction from their participation in the intervention CONCLUSIONS: This study demonstrated that the web‐based program, Bosom Buddies, was effective in reducing participants' scores on depression, perceived stress, and cancer‐related trauma measures. The effect size of the intervention was in the moderate range. Although web‐based social support groups offer many advantages, this delivery mechanism presents a number of ethical issues that need to be addressed. Cancer 2003;97:1164–73. © 2003 American Cancer Society. DOI 10.1002/cncr.11174
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“In general, ISGs that are moderated by a clinician tend to show benefits (31).”
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“Even so, it is clear that participants in these groups believe that their involvement helps them to become better informed and supported (Han et al., 2008; Lieberman & Goldstein, 2006; van Uden-Kraan, et al., 2009; Winzelberg et al., 2003).”
BackgroundEmpowerment of Cancer Survivors Through Information Technology: An Integrative Review
Groen, W. G., Kuijpers, W., Oldenburg, H. S., Wouters, M. W., Aaronson, N. K., & van Harten, W. H. (2015) · Journal of Medical Internet Research · doi:10.2196/jmir.4818 · Cited by 126
“Results of controlled studies range from positive effects on depression, cancer-related trauma, and perceived stress [59] to no effects and even negative effects on psychosocial distress and quality of life [60].”
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“…Internet-based support to cancer survivors may result in significant positive outcomes regarding social support, competence in finding information (Gustafson et al, 2001), depression (Winzelberg et al, 2003) and self-perceived health status (Owen et al, 2005) (Online Supplementary Table 1).”
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“…cancer patients' participation in CMSS groups is beneficial to their emotional well-being (Lieberman et al., 2003; Lieberman & Goldstein, 2005; Winzelberg et al., 2003), psychosocial well-being (Gustafson et al., 2001; Rodgers & Chen, 2005), and healthcare competence (van Uden-Kraan et al.,…”
BackgroundBantum, E. O., Albright, C. L., White, K. K. L., Berenberg, J. L., Layi, G., Ritter, P. L., Laurent, D. D., Plant, K., & Lorig, K. R. (2014) · Journal of Medical Internet Research · doi:10.2196/jmir.3020 · Cited by 123
“Some Web-based distress management interventions have been associated with benefit in terms of mood, perceived stress, and cancer-related trauma [13,18], while other interventions have similar results for both face-to-face and online interventions with the same content (eg, sexual counseling following prostate cancer…”
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“Our study provides evidence about the acceptance of a volunteer-based support program from an unbiased sample, which converges with findings from previous studies demonstrating that online peer support can be beneficial for women experiencing depression [19,40].”
Perceived Benefits of Online Support Groups for Women with Metastatic Breast Cancer
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“For example, Lieberman and colleagues (2003) found that group participation was associated with less depression and reactions to pain, and Winzelberg and colleagues (2003) found that participation helped to reduce depression, cancer-related trauma, and perceived stress.”
BackgroundGhanbari, E., Yektatalab, S., & Mehrabi, M. (2021) · JMIR mHealth and uHealth · doi:10.2196/19262 · Cited by 104
“In line with our research, a study by Winzelberg at al [56] found an internet support group to help reduce perceived stress, cancer-associated traumas, and depression in females with primary breast cancer.”
BackgroundResultFinding influential users of online health communities: a new metric based on sentiment influence
Zhao, K., Yen, J., Greer, G. E., Qiu, B., Mitra, P., & Portier, K. M. (2014) · Journal of the American Medical Informatics Association · doi:10.1136/amiajnl-2013-002282 · Cited by 119
Internet support groups for suicide survivors: A new mode for gaining bereavement assistance
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“Behavioral scientists have begun to devote more interest to study Internet support groups and a new literature is now emerging on how people use on-line groups to get help for a range of problems, such as breast cancer (Winzelberg et al., 2003), diabetes care (Zrebiec & Jacobson.”
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Online discussion of drug side effects and discontinuation among breast cancer survivors
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“In the past decade we have seen a lot of investments by the psycho-oncology research community into designing Internetbased peer support groups.(8,9,21,22,39) Such studies have shown promise in improving the psychological well-being of patients and facilitating health management.”
BackgroundExpressing Positive Emotions within Online Support Groups by Women with Breast Cancer
Han, J. Y., Shaw, B. R., Hawkins, R. P., Pingree, S., Mctavish, F. M., & Gustafson, D. H. (2008) · Journal of Health Psychology · doi:10.1177/1359105308097963 · Cited by 110
Understanding Topics and Sentiment in an Online Cancer Survivor Community
Portier, K. M., Greer, G. E., Rokach, L., Ofek, N., Wang, Y., Biyani, P., Yu, M., Banerjee, S., Zhao, K., Mitra, P., et al. (2013) · JNCI Monographs · doi:10.1093/jncimonographs/lgt025 · Cited by 102
Effects of web-based interventions on cancer patients’ symptoms: review of randomized trials
Fridriksdóttir, N., Gunnarsdóttir, S., Zoëga, S., Ingadóttir, B., & Hafsteinsdóttir, E. J. G. (2017) · Supportive Care in Cancer · doi:10.1007/s00520-017-3882-6 · Cited by 99
Individuals With Eating Disorders and the Use of Online Support Groups as a Form of Social Support
McCormack, A. (2009) · CIN Computers Informatics Nursing · doi:10.1097/ncn.0b013e3181c04b06 · Cited by 99
A 3-stage model of patient-centered communication for addressing cancer patients’ emotional distress
Dean, M., & Street, R. L. (2013) · Patient Education and Counseling · doi:10.1016/j.pec.2013.09.025 · Cited by 102
“Finally, clinicians can also identify possible resources for their patients such as social support groups as such groups have been found to reduce distress [41].”
BackgroundQiu, B., Zhao, K., Mitra, P., Wu, D., Caragea, C., Yen, J., Greer, G. E., & Portier, K. M. (2011) · International Conference on Social Computing · doi:10.1109/passat/socialcom.2011.127 · Cited by 98
“OHC participation increases social support [9][10], reduces levels of stress, depression, and psychological trauma [11][12], and helps participants be more optimistic about the course of their life with cancer [10].”
BackgroundBouma, G., Admiraal, J. M., de Vries, E. G. E., Schröder, C. P., Walenkamp, A. M. E., & Reyners, A. K. L. (2015) · Critical Reviews in Oncology/Hematology · doi:10.1016/j.critrevonc.2015.01.011 · Cited by 90
Project onward: an innovative e-health intervention for cancer survivors
Duffecy, J., Sanford, S., Wagner, L., Begale, M., Nawacki, E., & Mohr, D. C. (2013) · Psycho-Oncology · doi:10.1002/pon.3075 · Cited by 89
Classen, C. C., Chivers, M. L., Urowitz, S., Barbera, L. C., Wiljer, D., O’Rinn, S., & Ferguson, S. E. (2012) · Psycho-Oncology · doi:10.1002/pon.3058 · Cited by 91
“Empirical evaluations of Internet cancer support groups have emerged, including an randomized controlled trial (RCT) that found that a professionally led, web-based support group reduced distress in breast cancer patients [16].”
BackgroundSelf-citationWagner, E. H., Bowles, E. J. A., Greene, S. M., Tuzzio, L., Wiese, C. J., Kirlin, B., & Clauser, S. B. (2010) · BMJ Quality & Safety · doi:10.1136/qshc.2010.042374 · Cited by 91
Carrard, I., Rouget, P., Fernández-Aranda, F., Volkart, A.-C., Damoiseau, M., & Lam, T. (2006) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2005.07.031 · Cited by 88
“…Self-help techniques; Cognitive and behavioral therapy; Chronic disease management Summary Objective: This article presents initial results from a European multi-centre study to determine the effectiveness and feasibility of an online self-help treatment support program for Bulimia Nervosa (BN).”
BackgroundPreferences for e-mental health interventions in Germany: a discrete choice experiment
Phillips, E. A., Himmler, S. F., & Schreyögg, J. (2021) · Value in Health · doi:10.1016/j.jval.2020.09.018 · Cited by 88
“There is some evidence that participating in web-based support groups increases adherence and motivation(14,28) and can also be beneficial in reducing symptoms of stress.(29) We therefore included the attribute peer support in our survey.”
BackgroundOnline support groups for women with breast cancer
McCaughan, E., Parahoo, K., Hueter, I., Northouse, L., & Bradbury, I. (2017) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd011652.pub2 · Cited by 90
Bender, J. L., Katz, J. D., Ferris, L. E., & Jadad, A. R. (2013) · Patient Education and Counseling · doi:10.1016/j.pec.2013.07.009 · Cited by 86
Moyer, A. E., Sohl, S. J., Knapp‐Oliver, S. K., & Schneider, S. (2009) · Cancer Treatment Reviews · doi:10.1016/j.ctrv.2009.02.003 · Cited by 89
Wootten, A. C., Abbott, J.-A. M., Meyer, D., Chisholm, K., Austin, D. W., Klein, B., McCabe, M., Murphy, D. G., & Costello, A. J. (2015) · European Urology · doi:10.1016/j.eururo.2014.10.024 · Cited by 77
“Unfortunately, results have been inconsistent [27,29–32].”
Forsythe, L. P., Alfano, C. M., Kent, E. E., Weaver, K. E., Bellizzi, K. M., Arora, N. K., Aziz, N. M., Keel, G., & Rowland, J. H. (2014) · Psycho-Oncology · doi:10.1002/pon.3480 · Cited by 90
“Although the associations with social support tested in this study were modest, clinicians caring for survivors may foster numerous aspects of health and well-being in their patients, including mood, quality of life, management of physical symptoms [48,49], and, potentially, engagement in follow-up care, by making app…”
BackgroundAn online stress management workbook for breast cancer
Carpenter, K. M., Stoner, S. A., Schmitz, K., McGregor, B. A., & Doorenbos, A. Z. (2014) · Journal of Behavioral Medicine · doi:10.1007/s10865-012-9481-6 · Cited by 80
The mobile phone as a tool in improving cancer care in Nigeria
Odigie, V. I., Yusufu, L. M. D., Dawotola, D. A., Ejagwulu, F., Abur, P., Mai, A., Ukwenya, Y., Garba, E. S., Rotibi, B. B., & Odigie, E. C. (2012) · Psycho-Oncology · doi:10.1002/pon.1894 · Cited by 74
Oprescu, F., Campo, S., Lowe, J., Andsager, J., & Morcuende, J. A. (2013) · Journal of Medical Internet Research · doi:10.2196/jmir.2423 · Cited by 78
“Content analysis is an accepted method to study exchanges in online support communities [42,49,50].”
MethodSanjida, S., McPhail, S. M., Shaw, J., Couper, J., Kissane, D., Price, M. A., & Janda, M. (2018) · Psycho-Oncology · doi:10.1002/pon.4794 · Cited by 74
“Characteristics of each study are presented in Supplementary Table 1.(5,14-20,40-102) More than half of the included studies (n = 38/71) were published after 2010.”
BackgroundChange in post-traumatic stress symptoms following psychosocial treatment for breast cancer
Levine, E. G., Eckhardt, J., & Targ, E. (2005) · Psycho-Oncology · doi:10.1002/pon.882 · Cited by 72
Depression in women with metastatic breast cancer: A review of the literature
Caplette‐Gingras, A., & Savard, J. (2008) · Palliative & Supportive Care · doi:10.1017/s1478951508000606 · Cited by 75
“Most of these studies suggest that psychotherapy, particularly cognitive–behavioral therapy, is effective in reducing depressive symptoms in cancer patients (Marchioro et al., 1996; Antoni et al., 2001; Winzelberg et al., 2003; Given et al., 2004).”
BackgroundAndersson, E., Walén, C., Hallberg, J., Paxling, B., Dahlin, M., Almlöv, J., Källström, R., Wijma, K., Carlbring, P., & Andersson, G. (2011) · The Journal of Sexual Medicine · doi:10.1111/j.1743-6109.2011.02391.x · Cited by 73
Heisler, M., Halasyamani, L., Resnicow, K., Neaton, M., Shanahan, J., Brown, S., & Piette, J. D. (2007) · Congestive Heart Failure · doi:10.1111/j.1527-5299.2007.06412.x · Cited by 69
Transforming the Death Sentence: Elements of Hope in Women With Advanced Ovarian Cancer
Reb, A. M. (2007) · Oncology nursing forum · doi:10.1188/07.onf.e70-e81 · Cited by 76
“The flexibility, convenience, and cost-effectiveness of the internet, including Web-based support groups and nursing interventions, merit further research to assess the benefits (Dickerson et al., 2006; Winzelberg et al., 2003) and limitations of these forums (im, chee, Tsai, lin, & cheng, 2005; Winzelberg et al.”
Simblett, S. K., Birch, J., Matcham, F., Yágüez, L., & Morris, R. G. (2017) · JMIR Mental Health · doi:10.2196/mental.5558 · Cited by 74
“…pregnancy [40,41], physical injury or diagnosis of a chronic health condition such as cancer to oneself or a close other [26,30,31,33,49,51,53,63,64], organ transplant [55], complicated childbirth [52], as well as exposure to combat [29,35,38,44,47,54,56], sexual trauma [28], or natural…”
BackgroundInfluential“I Will Not Drink With You Today”: A Topic-Guided Thematic Analysis of Addiction Recovery on Reddit
Gauthier, R. P., Costello, M. J., & Wallace, J. R. (2022) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/3491102.3502076 · Cited by 73
“Notably, these structured communities have been found to be helpful for those with chronic conditions, including addiction [12, 80, 84, 92, 100, 105, 106].”
BackgroundUsing the World Wide Web in Health-related Intervention Research
Kirsch, S. E. D., & Lewis, F. M. (2004) · CIN Computers Informatics Nursing · doi:10.1097/00024665-200401000-00005 · Cited by 70
“10,11 Active patients and family members require more information to effectively communicate with healthcare providers, maneuver within a sophisticated healthcare system, and care for themselves.”
BackgroundComparing support to breast cancer patients from online communities and face-to-face support groups
Setoyama, Y., Yamazaki, Y., & Nakayama, K. (2010) · Patient Education and Counseling · doi:10.1016/j.pec.2010.11.008 · Cited by 70
“Recently, Sharf asserted that breast cancer patients exchanged social support online [6,7] and that those were useful in various psycho-social aspects [8,9].”
BackgroundResultHow New Subscribers Use Cancer-Related Online Mailing Lists
Rimer, B. K., Lyons, E., Ribisl, K. M., Bowling, J. M., Golin, C. E., Forlenza, M. J., & Meier, A. (2005) · Journal of Medical Internet Research · doi:10.2196/jmir.7.3.e32 · Cited by 70
Metadata
- Authors
- Winzelberg, A. J., Classen, C., Alpers, G. W., Roberts, H., Koopman, C., Adams, R. E., Ernst, H., Dev, P., & Taylor, C. B.
- Affiliations
- Stanford Medicine (US)
- Corresponding author
- Winzelberg, Andrew J.
- Venue
- Cancer
- Publisher
- Wiley
- Published
- 2003-02-20
- Volume
- 97
- Issue
- 5
- Pages
- 1164-1173
- ISSN
- 0008-543X (ISSN-L)
- 1097-0142
- OpenAlex
- W2035352836
- Cited by
- 485
- References
- 71
- Citations by year
- 2026: 7 · 2025: 7 · 2024: 11 · 2023: 17 · 2022: 14 · 2021: 16 · 2020: 18 · 2019: 19 · 2018: 22 · 2017: 24 · 2016: 16 · 2015: 24 · 2014: 40 · 2013: 44 · 2012: 28
- FWCI
- 8.68
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Cancer (publishedVersion)
- PubMed (publishedVersion)
- MADOC (University of Mannheim) (submittedVersion)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Women's cancer prevention and management
- Keywords
- breast cancer, online social support, psychological distress, depression, perceived stress, newsgroups, quality of life, patient satisfaction
- MeSH terms
- Adult, Aged, Breast Neoplasms, Depression, Female, Humans, Middle Aged, Psychiatric Status Rating Scales, Self-Help Groups, Stress Disorders, Post-Traumatic, Patient Satisfaction, Internet
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