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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).”
From Behavioral Intervention Technologies: Evidence review and recommendations for future research in mental health (2013) · cites this paper as [31]
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Seeking and receiving social support on Facebook for surgery
Davis, M. A., Anthony, D. L., & Pauls, S. D. (2015) · Social Science & Medicine · doi:10.1016/j.socscimed.2015.02.038 · Cited by 40
“Online communities have been found to be a beneficial source of peer support for specific patient groups (Moorhead et al., 2013; Coulson et al., 2007) and potentially as effective as face-to-face support groups (Winzelberg et al., 2003).”
BackgroundTalking with text: Communication in therapist-led, live chat cancer support groups
Stephen, J. E., Collie, K., McLeod, D. L., Rojubally, A., Fergus, K. D., Speca, M., Turner, J., Taylor‐Brown, J., Sellick, S., Burrus, K., et al. (2013) · Social Science & Medicine · doi:10.1016/j.socscimed.2013.12.001 · Cited by 45
Tsai, Y.-H., Joe, S.-W., Lin, C., Wang, R.-T., & Chang, Y.-H. (2012) · Technological Forecasting and Social Change · doi:10.1016/j.techfore.2012.05.013 · Cited by 41
“Web-based social support groups are widely used and powerful in practice, but little is known how they can function effectively [107].”
BackgroundDetecting emotional expression in face-to-face and online breast cancer support groups.
Liess, A., Simon, W. M., Yutsis, M. V., Owen, J. E., Piemme, K. A., Golant, M., & Giese‐Davis, J. (2008) · Journal of Consulting and Clinical Psychology · doi:10.1037/0022-006x.76.3.517 · Cited by 40
Authorship and Information Sourcing for Health News on Local TV Web Sites: An Exploratory Analysis
Tanner, A. H., & Friedman, D. B. (2010) · Science Communication · doi:10.1177/1075547010364926 · Cited by 39
Peer‐to‐peer connections: Perceptions of a social support app designed for young adults with cancer
Lazard, A. J., Saffer, A. J., Horrell, L. N., Benedict, C., & Love, B. (2019) · Psycho-Oncology · doi:10.1002/pon.5220 · Cited by 39
Hinds, P. S., Burghen, E. A., Haase, J. E., & Phillips, C. R. (2006) · Oncology nursing forum · doi:10.1188/06.onf.s1.23-29 · Cited by 39
Köther, A. K., Büdenbender, B., Grüne, B., Holbach, S., Huber, J. C., von Landenberg, N., Lenk, J. D., Martini, T., Michel, M. S., KRIEGMAIR, M. C., et al. (2022) · Cancer Medicine · doi:10.1002/cam4.4667 · Cited by 38
Self-citationInternet Cancer Support Groups
Im, E., Chee, W., Tsai, H.-M., Lin, L.-C., & Cheng, C. (2005) · Cancer Nursing · doi:10.1097/00002820-200501000-00001 · Cited by 38
Dissecting an Online Intervention for Cancer Survivors
Chen, Z., Koh, P. W., Ritter, P. L., Lorig, K. R., Bantum, E. O., & Saria, S. (2014) · Health Education & Behavior · doi:10.1177/1090198114550822 · Cited by 37
“There have been several studies linking participation in online cancer social support intervention with behavioral and or health status outcomes including participation in health care, depression, and stress (Gustafson et al., 2001; Winzelberg et al., 2003; Wise, Han, Shaw, McTavish, & Gustafson, 2008).”
BackgroundEvaluation of CancerChatCanada: A Program of Online Support for Canadians Affected by Cancer
Stephen, J. E., Rojubally, A., MacGregor, K., McLeod, D. L., Speca, M., Taylor‐Brown, J., Fergus, K. D., Collie, K., Turner, J., Sellick, S. M., et al. (2013) · Current Oncology · doi:10.3747/co.20.1210 · Cited by 38
"Is Cybermedicine Killing You?" - The Story of a Cochrane Disaster
Eysenbach, G., & Kummervold, P. E. (2005) · Journal of Medical Internet Research · doi:10.2196/jmir.7.2.e21 · Cited by 35
“Of these, only 6 studies were included in the Cochrane review, 3 were excluded, but more than half (as many as 11 studies [20-29]) were not cited or mentioned in the Cochrane review, although many of them appear relevant or should at least have been explicitly excluded (see Multimedia Appendix 3).”
BackgroundThe Importance of Type, Amount, and Timing of Internet Use for Understanding Psychological Distress*
Cotten, S. R., Goldner, M., Hale, T. M., & Drentea, P. (2011) · Social Science Quarterly · doi:10.1111/j.1540-6237.2011.00760.x · Cited by 38
The Use of Internet Cancer Support Groups by Ethnic Minorities
Im, E., & Chee, W. (2007) · Journal of Transcultural Nursing · doi:10.1177/1043659607309140 · Cited by 35
“Because of these flexible characteristics, cancer patients are getting necessary support through ICSGs, even when they do not have transportation to participate in traditional face-to-face support groups, when they are awake alone in the night, and when they are too weak to function normally in their daily lives (Hoyb…”
BackgroundMoon, T., Chih, M., Shah, D. V., Yoo, W., & Gustafson, D. H. (2017) · Journalism & Mass Communication Quarterly · doi:10.1177/1077699016687724 · Cited by 34
Online Communities as Sources of Peer Support for People Living With Cancer: A Commentary
Gupta, T., & Schapira, L. (2018) · Journal of Oncology Practice · doi:10.1200/jop.18.00261 · Cited by 34
Online Support for Employed Informal Caregivers
Klemm, P. R., Hayes, E. R., Diefenbeck, C. A., & Milcarek, B. I. (2013) · CIN Computers Informatics Nursing · doi:10.1097/cin.0000000000000009 · Cited by 37
“Regardless of the format, OSGs depend on active participation and supportive exchanges between members.(14,23,24,26,27) A few studies report that nonparticipants (ie, lurkers) may benefit from online groups.”
BackgroundCharacteristics of Cancer Patients in Internet Cancer Support Groups
Im, E., Chee, W., Liu, Y., Lim, H. J., Guevara, E., Tsai, H. M., Clark, M., Bender, M. S., Shin, H., Kim, K. S., et al. (2007) · CIN Computers Informatics Nursing · doi:10.1097/01.ncn.0000299655.21401.9d · Cited by 34
“Also, participation in ICSGs has been reported to reduce negative moods, including depression and cancer-related trauma.(4,9,11,15) Despite these positive findings, the ICSGs have been critiqued for their selective membership.”
BackgroundAshtari, S., & Taylor, A. (2023) · JMIR Formative Research · doi:10.2196/41610 · Cited by 33
“The importance of online support groups has been studied among diverse groups [5] including diseases like Parkinson disease [7], psychiatric disabilities [9], Amyotrophic Lateral Sclerosis (ALS) [10], breast cancer [11], chronic diseases [12-14], neuromuscular disorders [15], and alcoholism [16].”
BackgroundBrandt, S. A., & Carmichael, C. L. (2020) · Computers in Human Behavior · doi:10.1016/j.chb.2020.106429 · Cited by 37
Olesen, S. C., Butterworth, P., & Leach, L. (2010) · Australian & New Zealand Journal of Psychiatry · doi:10.3109/00048674.2010.483680 · Cited by 33
“Are these individuals receiving appropriate care for their mental health problems? Several of the support services and self-management strategies assessed in the 2007 NSMHWB have demonstrated some level of effectiveness for the amelioration of psychological symptoms [21,22,24,36,37,39].”
BackgroundLife After BRCA1/2 Testing: Family Communication and Support Issues
Demarco, T. A., & Mckinnon, W. (2007) · Breast Disease · doi:10.3233/bd-2007-27108 · Cited by 33
“Web-based support groups for women with breast cancer have been shown to be effective in reducing psychological distress [64].”
Owen, J. E., Bantum, E. O., Criswell, K. R., Bazzo, J., Gorlick, A., & Stanton, A. L. (2013) · Journal of Behavioral Medicine · doi:10.1007/s10865-013-9509-6 · Cited by 32
“, 2010), trials using convenience samples have identified benefits associated with Internet-based intervention (Hill & Weinert, 2004; Lieberman et al., 2003; McTavish et al., 1995; Winzelberg et al., 2003), whereas results from trials that incorporate a systematic sample have yielded inconsistent findings, including w…”
BackgroundResultInfluentialRandomized Trial of a Social Networking Intervention for Cancer-Related Distress
Owen, J. E., Bantum, E. O., Pagano, I., & Stanton, A. L. (2017) · Annals of Behavioral Medicine · doi:10.1007/s12160-017-9890-4 · Cited by 33
“[21] examined the effects of a 12-week facilitated intervention (Bosom Buddies).”
Dawley, W. (2018) · Anthropological Quarterly · doi:10.1353/anq.2018.0003 · Cited by 31
“See Docherty (2004), Ussher et al. (2006), and Winzelberg et al. (2003) on cancer support groups.”
BackgroundMattsson, S., Alfonsson, S., Carlsson, M. E., Nygren, P., Olsson, E. M. G., & Johansson, B. (2013) · BMC Cancer · doi:10.1186/1471-2407-13-414 · Cited by 34
Devitt, B. A., Hatton, A., Baravelli, C. M., Schofield, P. E., Jefford, M., & Mileshkin, L. (2010) · Journal of Thoracic Oncology · doi:10.1097/jto.0b013e3181e004b2 · Cited by 31
“Things my doctor never told me”: Bridging information gaps in an online community
Rubenstein, E. L. (2012) · Proceedings of the American Society for Information Science and Technology · doi:10.1002/meet.14504901126 · Cited by 31
“Research has shown that participation in online health communities helps patients cope with their illnesses in important ways including reducing depression and stress, combatting loneliness, and having access to extended social networks that offer information not available from face-toface relationships (Gustafson et…”
BackgroundGorlick, A., Bantum, E. O., & Owen, J. E. (2014) · Psycho-Oncology · doi:10.1002/pon.3443 · Cited by 30
Ding, X., Zhao, F., Zhu, M., Wang, Q., Wei, S., Xue, J., & Li, Z. (2023) · Complementary Therapies in Clinical Practice · doi:10.1016/j.ctcp.2023.101803 · Cited by 34
Online interaction. Effects of storytelling in an internet breast cancer support group
Høybe, M. T., Johansen, C., & Tjørnhøj‐Thomsen, T. (2008) · Journal of Social Intervention Theory and Practice · doi:10.18352/jsi.93 · Cited by 30
“Participation in internetbased support groups has also been suggested to reduce depression and cancer-related trauma (Houston et al., 2002; Lieberman et al., 2003; Winzelberg et al., 2003).”
BackgroundInfluentialNew Age Eunuchs: Motivation and Rationale for Voluntary Castration
Wassersug, R. J., Zelenietz, S. A., & Squire, G. F. (2004) · Archives of Sexual Behavior · doi:10.1023/b:aseb.0000037424.94190.df · Cited by 30
Options for early breast cancer follow-up in primary and secondary care - a systematic review
Taggart, F. M., Donnelly, P. K., & Dunn, J. (2012) · BMC Cancer · doi:10.1186/1471-2407-12-238 · Cited by 29
Chat Room Computer-Mediated Support on Health Issues for Aboriginal Women
Hoffman‐Goetz, L., & Donelle, L. (2007) · Health Care For Women International · doi:10.1080/07399330601180057 · Cited by 29
“Online support groups are also increasingly prevalent and recognized as a significant source of health information and social support (Brennan & Fink, 1997; Bresnahan & Murray-Johnson, 2002; Burrows, Nettleton, Pleace, Leader, & Mancer, 2000; Hardey, 1999; O’Connor & Madge, 2004; Preece, 1998; Reeves, 2000; White & Do…”
Background
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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