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Evaluation of an internet support group for women with primary breast cancer
Article first published online: 20 FEB 2003
Copyright © 2003 American Cancer Society
Volume 97, Issue 5, pages 1164–1173, 1 March 2003
How to Cite
Winzelberg, A. J., Classen, C., Alpers, G. W., Roberts, H., Koopman, C., Adams, R. E., Ernst, H., Dev, P. and Taylor, C. B. (2003), Evaluation of an internet support group for women with primary breast cancer. Cancer, 97: 1164–1173. doi: 10.1002/cncr.11174
- Issue published online: 20 FEB 2003
- Article first published online: 20 FEB 2003
- Manuscript Accepted: 10 OCT 2002
- Manuscript Revised: 7 OCT 2002
- Manuscript Received: 12 AUG 2002
- U.S. Department of the Army. Grant Number: DAMD17-99-9387
- primary breast carcinoma;
- social support group;
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.
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.
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
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.
Women with breast carcinoma commonly experience psychologic distress following their diagnosis.1–4 These symptoms can be long-standing.5 To cope with their illness, many women participate in breast cancer support groups.6–8 In controlled studies, women who participate in breast cancer support groups have reported significant reduction in their psychologic distress and pain, as well as improvement in their quality of life.9–18 Evaluation of community-based cancer support programs provides further empiric evidence that support groups are beneficial.8, 19–22 However, not all empiric studies report positive outcomes.20, 23
Historically, face-to-face groups have been the primary method of delivering breast cancer support groups. Now, however, the wide availability of Internet-connected computers creates the opportunity for groups to be provided electronically. The Pew Foundation report on internet use24 found that 104 million American adults had internet access at the end of 2000, 55% of those with internet access (52 million persons) have sought health information from the web, and 9–36% of health information seekers have participated in an on-line support group.
Hundreds of on-line groups now exist for cancer patients.25, 26 In their review of disease-related on-line support groups, Davison et al.7 found that breast cancer support groups ranked third in the frequency of postings (an objective, but rough, measure of participation) for the disease-related on-line support groups they evaluated.
Web-based support groups offer a number of advantages over face-to-face groups. First, the modality of delivery is relatively flexible because information can be delivered synchronously (e.g., real-time chat rooms) or asynchronously (e.g., newsgroups). Second, there are a variety of facilitation options. Compared with face-to-face groups, there is greater scheduling convenience and increased access to care for individuals who otherwise could not participate in such groups due to their health status, residence in remote areas, or social anxiety. Finally, comparatively fewer resources are required to moderate a group, thus reducing costs. The disadvantages are that individuals must have access and know how to use computers and the internet and they should be comfortable reading and writing in the language in which the group is provided. It is possible that participants could become overreliant on their internet-based relationships, resulting in increased social isolation.
Despite the many potential advantages, the few potential disadvantages, and the widespread use of web-based group interventions, to our knowledge, only one randomized, controlled study has evaluated the effectiveness of a web-based breast cancer support group.27 The few published reports of web-based breast cancer groups have been either in the form of surveys, analysis of participants' communications,28, 29 or uncontrolled studies.30 Randomized trials are needed to demonstrate the effectiveness of these interventions, particularly regarding their psychologic benefits.
Weinberg et al.29 investigated the impact of a computer bulletin board on six women with breast carcinoma. They found that group members actively used the support group to discuss their medical condition, offer support to each other, and to share their personal concerns. Weinberg et al. described the discourse as having similar features to face-to-face support groups.
Similarly, Sharf28 reviewed the discourse of a breast cancer on-line newsgroup and found that members used the group to exchange information, provide social support, and enhance personal empowerment. Group members reported that the group was helpful because it facilitated a change in focus from feeling preoccupied with their own illness to thinking of others.
Finally, Lieberman et al.30 evaluated a web-based synchronous (i.e., chat room) breast cancer support group in an uncontrolled study. Group members participated in the chat room for 1 1/2 hours a week for 16 weeks. The groups were moderated and unstructured. Between sessions, participants were able to read transcripts of the previous session and post messages to each other in a newsgroup. Participants reported significant reductions in depressed mood and subjective pain. Lieberman and Russo31 found that the members of web-based breast cancer support groups interact in ways similar to those seen in face-to-face support groups.
The earliest and most extensively assessed web-based support group is the Comprehensive Health Enhancement Support System (CHESS) that was developed at and is maintained by the University of Wisconsin.27, 32–35 Designed to provide health-related information, emotional support, and decision-making guidance to patients with various illnesses, CHESS support groups are unmoderated and unstructured. Initial findings indicate that women find CHESS beneficial and easy to use.34 A recent randomized, controlled trial34 of the network was completed with 246 women who were younger than the age of 60 years who had been diagnosed with breast carcinoma within the last 6 months. Participants assigned to the CHESS intervention had access to the website for 6 months. Control group participants were given a copy of “Dr. Susan Love's Breast Book.”36 Gustafson et al.37 found that participants assigned to the CHESS condition reported increased social support and competence with seeking on-line information. There were no differences in quality of life (as measured by the Functional Assessment of Cancer Therapy-B [FACT-B]) or well-being. Furthermore, the psychologic benefits of participation were greatest for women from underserved populations.27
The evidence for effective web-based breast cancer support groups is limited. However, on-line interventions have been found to be beneficial to patients seeking treatment/help for substance abuse,38 sexual abuse,39 smoking cessation,40 general medical concerns,7 parenting concerns,41, 42 eating disorders,43–45 and anxiety.46
The current study provides empiric evidence regarding the psychologic benefits of on-line breast cancer support groups, particularly asynchronous support groups. This is the most common group format available on the Internet and one that easily adjusts to participants' varying schedules. We evaluated a 12-week, structured, moderated, web-based support group for women with breast carcinoma in a randomized, clinical trial. We hypothesized that, compared with women on a wait-list control (WLC) group, women who participated in the intervention would report improved psychologic coping skills and decreased psychologic distress.
MATERIALS AND METHODS
Eligibility for the current study was determined by meeting all of the following criteria: being female, receiving a primary breast carcinoma diagnosis within the last 32 months, having no suicidal ideation, living in California, and being able to communicate in written English. Because there is still ambiguity regarding the legal responsibilities of moderators of online support groups, we made a conservative decision to restrict eligibility to participants who resided in California—the state in which the moderators were licensed to practice psychology. Suicidal ideation was evaluated when participants completed baseline assessments. Participants endorsing suicidal ideation would be evaluated by one of the authors (CBT).
Participants were recruited through public service announcements on local radio and in newspapers and flyers distributed to oncology offices in the San Francisco Bay Area and Los Angeles. Eligibility was based on self-report. Confirmation of cancer diagnosis was not confirmed by review of medical records. One hundred fifty-one women responded to our recruitment advertisements. Seventy-two women met the eligibility requirements and elected to join the study. Of the 79 women who did not enroll in the study, 24 were excluded because they lived outside of California, 13 did not meet the cancer diagnosis requirements, 3 could not make the time commitment, and the remaining 39 were uninterested once they knew the details of the study.
Eighty percent (n = 58) of the participants identified themselves as Caucasian, 4% (n = 3) as African American, 4% (n = 3) as Asian, 6% (n = 4) as Hispanic/Latina, and 6% (n = 4) as “other” ethnicities. The average age of participants was 49.5 years old (SD = 6.2; range, 30–69 years). Sixty-eight percent (n = 49) were married, 15% (n = 11) were single, 11% (n = 8) were divorced, 4% (n = 3) were widowed, and 1% (n = 1) was separated. Most of the participants were highly educated. Thirty-six percent (n = 26) had attended at least some graduate school, 28% (n = 20) had completed a bachelor's degree, 28% (n = 20) had attended some college, 1% (n = 1) had completed trade school, and 7% (n = 5) had a high school education or less. On average, participants entered the study 12 months following their diagnosis (SD = 9 months; range, 1–32 months). Thirty-four percent of participants (9 WLC, 13 intervention group) were participating in another breast cancer support group or individual counseling at baseline. No data were collected on posttest participation in psychologic interventions.
Women interested in participating in the study were mailed a study information sheet and consent form. After signing and returning the consent form, each participant was assigned a password that allowed her to log onto the web site to complete the baseline measures. Once a participant had completed her questionnaires, she was assigned randomly to either the immediate intervention or the WLC group. Participants were recruited in two waves (Wave 1 had 42 participants, Wave 2 had 30 participants).
At the termination of the group, participants completed an identical battery of measures. Participants experiencing computer problems were able to contact two members of the research team for assistance via e-mail or telephone. Those who did not have access to a computer with Internet access were loaned, free of charge, a WebTV computer (Sony Electronics, New York, NY; Phillips Electronics, Atlanta, GA) and were instructed on its use. Three consecutive groups were run (n = 10, 11, and 15). One group was moderated by AJW and two were moderated by CC. At the conclusion of the posttreatment assessment, participants who were assigned to the WLC group were invited to participate in their own support group intervention.
Description of the Intervention
Bosom Buddies is a 12-week, structured, web-based support group moderated by a mental health professional. The program introduces a new topic related to breast cancer each week and the moderator facilitates a discussion on these topics and related concerns (Table 1). The themes for the weekly sessions and the theoretic underpinnings of the intervention are adapted from Spiegel's supportive-expressive group therapy for cancer patients47, 48 and from Kreshka's text in her workbook-journal on coping with breast cancer.49, 50Bosom Buddies encourages participants to express openly and honestly their thoughts and emotions, to receive and offer support, and to learn new ways to cope with cancer. Participants with a variety of experiences and backgrounds (e.g., age, treatment choices, specific diagnosis, and time coping with their diagnosis) were encouraged to join the group with the assumption that the diversity of participants' experiences would be beneficial to the group.
|1||Introduction: Participants are asked to introduce themselves by describing their illness and treatment and to describe how they are doing now and what they hope to get from participating in the group. The moderator introduces herself and gives a perspective on what the group can offer to participants.|
|2||Getting to know you: Participants are encouraged to ask each other questions to learn how to support and interact with each other. It is recommended that they pay attention to the emotions participants post when they log in. Information is provided on how to understand painful emotions.|
|3||Difficult emotions: Participants are encouraged to tell the group and write in their journals about any difficult emotions they are experiencing and what they have done to cope with them.|
|4||Medical team: Participants are asked to focus on their relationship with their medical team and to discuss their successes and frustrations in working with their physicians. Recommendations are given for how to get more help from their medical team.|
|5||Uncertainty and helplessness: Participants are asked to share any feelings of uncertainty and helplessness with each other, particularly fears of recurrence or fears about the future. Information is provided on why some people deny feelings of helplessness and strategies for coping with these feelings including prayer.|
|6||Self and body image: Participants are invited to share the impact breast carcinoma has had on how they feel about their bodies, the feelings they have about this, and what they have done to accept changes to their physical features.|
|7||Romance and sexuality: Participants are asked to share with the group how they feel about themselves as sexual beings and to discuss any changes they have noticed in their sexuality or with their partner since the diagnosis.|
|8||Family: The focus of this week's topic is on how cancer has affected participants' relationship with their families, the reactions of family members, talking to children about the illness, asking for help, and encouraging family members to seek support.|
|9||Friends: Participants are asked to share how their friends and coworkers reacted to their diagnosis and how it has affected these relationships. Suggestions are given for how to ask for help from friends and coworkers.|
|10||Fear of recurrence: Participants are asked to think about and discuss their concerns and fears about a recurrence, how it may have already affected their lives, and what they have done to cope with it.|
|11||Meaning of life: Participants are asked to reflect on how their priorities have changed as a result of the cancer. They are asked to write a mission statement—a statement to describe their overall purpose or direction for their lives.|
|12||Closure: For the last week, participants are asked to reflect on what the group has meant to them, what they have gotten from the experience, and to say goodbye to each other.|
After logging on to the password-protected Bosom Buddies web site, participants were able to read personal stories from survivors, share their own experiences, and keep a web-based personal journal that was closed to review by other group members. To facilitate each group member's ability to make emotional connections with other members, participants wrote a brief description of how they were feeling when they logged on to the web site. Each group member could review all reported emotional states on a separate web page called “My Buddies.” Members' login times were posted to enable participants to see when other members last logged on to the web site. The group format was asynchronous, meaning that the participants could log on and post comments at any time, without depending on others to be on-line at the same time. Although a mental health professional moderated the group, participants were informed that the group was not meant to serve as a form of psychotherapy or as an alternative to psychotherapy. Participants were told that they could contact the researchers for a psychiatric referral for evaluation and treatment in the event of a psychiatric emergency.
The moderator's primary task was to keep the conversation on the theme of the weekly topic and to encourage members to support one another. The moderator paraphrased participants' comments, encouraged discussion and feedback between participants, and directed the conversation back to the weekly theme. Specifically, the moderators refrained from making psychologic interpretations, providing medical or psychologic advice, or developing a personal “therapeutic” relationship with participants. The moderator read messages posted to the support group at least twice per week. Each participant was encouraged to post a photograph of herself on the web site, although only one-half elected to do so (n = 18). These images appeared next to participants' biographic summaries, as well as next to each message they posted to the support group.
Center for epidemiological studies-depression scale
The CES-D scale51 is a 20-item self-report measure designed to assess depressive symptoms in the general population. It has high internal consistency (α = 0.89) with cancer patients52 and adequate test-retest reliability. The CES-D permitted comparison to other cancer studies that used this measure, was sensitive to intervention effects, and was easily administered.52 As recommended by Ensel,53 a cutoff score of 16 was used to identify depression.
PTSD checklist-civilian version
The PCL-C54 is a 17-item self-report measure of posttraumatic stress disorder (PTSD) that has been used previously with cancer survivors. The items on the PCL-C correspond with the clinical symptoms used to diagnose PTSD. Participants were asked to rate on a five-point Likert scale the degree to which they have been bothered by each symptom in the last month. The PCL-C has excellent internal consistency (α = 0.97), test-retest reliability (0.96), and convergent validity.
State-trait anxiety inventory-state scale
The STAI55 is a global measure of state anxiety. The 20-item STAI rates on a four-point Likert scale the feelings of apprehension, tension, nervousness, and worry, which increase in response to physical danger and psychologic stress. The reliability and validity of this tool for measuring anxiety have been well established. The overall median alpha coefficients evaluating internal consistency in normative samples have ranged from 0.86 to 0.92.55
The perceived stress scale
Participants' age, ethnicity, breast carcinoma diagnosis and treatment history, use of adjunct psychosocial services, and socioeconomic status were collected at baseline only.
Cancer behavior inventory
The CBI57 focuses on the perceived ability to implement cognitive-behavioral strategies for coping (self-efficacy) with cancer as a serious illness. It includes 51 items on six subscales: maintaining activity and independence, coping with treatment-related side effects, accepting cancer/maintaining positive attitude, seeking and understanding medical information, affective regulation, and seeking support. For each item on the CBI, the respondent was asked to rate her confidence in being able to accomplish that behavior on a 1–9 scale (1 = “not at all confident” to 9 = “totally confident”). Subscale scores were derived by summing scores for the items comprising particular subscales. This measure has satisfactory internal consistency (α = 0.75–0.88) and validity.57
Mini-mental adjustment to cancer scale
The Mini-MAC58 is a self-report questionnaire designed to assess specific ways of responding to cancer. This scale has been widely used with breast carcinoma patients to determine the extent to which they have adjusted to living with cancer.59–61 The Mini-MAC comprises 29 items rated on a four-point Likert scale ranging from 1 (“definitely does not apply to me”) to 4 (“definitely does apply to me”). Five subscales from the Mini-MAC were used: fighting spirit, helpless/hopeless, anxious preoccupation, denial, and fatalism. Internal consistency of the subscales range from 0.65 (fatalism) to 0.84 (fighting spirit).
A nine-item questionnaire was completed by the women, which was designed to assess their perceptions of the group on dimensions relevant to psychosocial support groups. The group experience measure is modeled after a measure used by Lieberman and Snowden.62 The items assessed how much group participants felt support and encouragement, were able to help others, learned that their problems were not unique, developed new friends, offered advice, expressed feelings, modeled themselves after other group members, confronted problems and fears, and discussed sexual concerns. Each item was rated on a four-point Likert scale ranging from 1 (“none”) to 4 (“a great deal”).
First, independent samples t tests, using a two-tailed level of significance, compared the two groups (immediate treatment vs. WLC) on baseline measures, including demographic characteristics, as well as on outcome measures. The data were analyzed to determine whether the randomization procedure was effective and whether baseline differences existed between the groups. Second, independent samples t tests were conducted to compare completers and noncompleters (those who did not complete posttest measures) on baseline variables. Third, using analysis of covariance (ANCOVA) with each baseline assessment of the independent variable of interest as a covariate, the intervention group was compared with the WLC group. We added the covariate to remove the variance in outcome that is explained by baseline scores and to detect the level of variance that is attributable to group. For dichotomous outcome variables, logistic regression was employed. Finally, an intention-to-treat analysis was performed. Baseline scores were inserted for missing posttest data using ANCOVA as previously described. Intervention effect size was calculated for each of the outcomes showing significant differences between treatment and WLC. These were computed in three steps: calculating the change score for the intervention and control group between baseline and posttest on each outcome measure, subtracting the change score for the WLC group from the change score for the intervention group, and dividing this difference by the pooled standard deviation of the chosen measure at baseline.
No baseline differences were found between the intervention and WLC groups on any of the measures. Of the 72 participants, 14 women did not complete their postintervention assessment (8 intervention, 6 WLC). Two participants did not complete the postassessments because they were out of the country during this period and one participant's cancer progressed and she died before posttest data collection. No significant differences were found between drop-outs and those who did not drop out on any baseline measures.
Participants logged on to the Bosom Buddies web site an average of 34 times (SD = 29; range, 3–122) during the intervention. They posted an average of 36 support group messages (SD = 38; range, 1–146 messages). The personal journal feature was not used regularly. Of 36 participants, only 14 participants posted at least once to their personal journal (M = 1.6, SD = 2.7).
The means and standard deviations for the intervention and WLC groups are presented in Table 2. Significant group differences, indicative of improvement in the intervention group, were found on the following measures: CES-D, F(1,55) = 6.0, P < 0.01 (confidence interval [CI]: WLC, 13.3–18.6; intervention, 8.6–14.1); PCL, F(1,55) = 8.36, P < 0.01 (CI: WLC, 30.8–36.6; intervention, 24.7–30.7); and PSS, F(1,55) = 3.8, P < 0.05 (CI: WLC, 13.8–17.4; intervention, 11.6–14.9). Nineteen intervention and 17 WLC group participants scored above the 16-point cutoff for depression on the CES-D at baseline, whereas at post-test 10 intervention group participants dropped below this cutoff in comparison to five WLC group participants (Wald  = 0.99, P = 0.321, n.s.).
|Measures||Control group (n = 36)||Intervention group (n = 36)||F||Effect size|
|Pre M (SD)||Post M (SD)||Pre M (SD)||Post M (SD)|
|CES-D||16.8 (9.9)||16.1 (10.4)||17.4 (11.0)||11.1 (7.4)||6.00a||0.54|
|PCL-C||33.1 (12.1)||33.4 (13.9)||32.5 (10.0)||27.9 (7.6)||8.36a||0.45|
|PSS||16.0 (7.4)||15.5 (6.3)||16.4 (7.3)||13.2 (5.6)||3.88b||0.37|
|STAI||47.8 (12.7)||48.2 (10.5)||46.8 (11.2)||47.8 (12.7)||0.78||−0.05|
|Cancer Behavior Inventory|
|Seeking support||20.7 (5.5)||21.5 (4.8)||20.8 (5.3)||20.8 (5.2)||0.59||0.15|
|Seeking understanding||13.8 (3.8)||13.8 (3.2)||14.5 (2.8)||14.1 (3.4)||0.03||0.11|
|Coping||11.9 (4.1)||12.7 (3.4)||12.3 (3.3)||13.0 (3.9)||0.19||0.04|
|Affect regulation||15.8 (3.4)||15.7 (3.2)||16.6 (2.1)||16.3 (3.3)||0.08||0.07|
|Positive attitude||20.2 (5.6)||19.8 (4.8)||20.0 (4.5)||21.0 (5.2)||0.40||−0.28|
|Activity/independence||12.6 (4.0)||12.6 (3.7)||13.9 (3.5)||13.4 (4.0)||0.00||0.13|
|Helpless/hopeless||10.6 (3.4)||11.3 (3.5)||10.9 (4.2)||11.3 (3.5)||0.21||0.08|
|Anxious preoccupation||20.1 (5.7)||19.4 (5.2)||20.5 (5.8)||19.8 (4.8)||0.90||0.0|
|Fighting spirit||13.6 (2.5)||13.4 (1.7)||13.3 (2.6)||13.9 (1.7)||0.95||−0.32|
|Cognitive avoidance||8.0 (2.8)||8.5 (2.7)||7.6 (3.0)||7.7 (2.6)||1.02||0.14|
|Fatalism||12.2 (0.7)||12.8 (0.5)||12.7 (0.7)||13.2 (0.5)||0.45||0.03|
Intention-to-treat analyses were also performed. Significant group differences were found on the following measures: CES-D, F(1,72) = 4.3, P < 0.04 (CI: WLC, 13.5–18.1; intervention, 10.1–14.7); PCL, F(1,72) = 8.42, P < 0.01 (CI: WLC, 31.4–36.3; intervention, 26.4–31.3); and PSS, F(1,72) = 4.9, P < 0.03 (CI: WLC, 14.3–17.3; intervention, 11.9–14.9).
Intervention Effect Sizes
The effect sizes for significant measures were CES-D (0.54), PCL (0.45), and PSS (0.38), each indicating a medium effect size.63
To determine if participation predicted outcome, Pearson correlations were run between change scores on the significant measures (CES-D, PCL, and PSS) and the number of logins and support group postings. None of the correlations were significant (range r = −0.03 to −0.19). The amount of time from participants' date of diagnosis with breast carcinoma to beginning the intervention was not significantly correlated with changes in the above measures (range r = −0.20 to 0.09).
Intervention group participants reported that they used the group for providing and receiving emotional support, forming new friendships, understanding that their problems were not unique, and confronting difficult problems and fears. To a lesser extent, group participants reported feeling comfortable discussing sexual concerns with other group participants and modeling others' behaviors (Table 3).
|Issue||Percent reporting “a lot” or “great deal”|
|Getting support and encouragement||65|
|Learning problems are not unique||56|
|Developing new friendships||63|
|Expressing true feelings||65|
|Modeling myself after group participants||30|
|Confronting difficult problems and fears||44|
|Discussing sexual concerns||44|
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. These values are comparable to those effects found in recent studies of face-to-face groups.11, 64 Contrary to our expectations, no significant changes were found on self-report measures of anxiety, nor in general and specific aspects of coping with cancer. In general, participants actively used the intervention, logging on almost three times a week and posting three messages a week although the range of participation was quite wide. In general, participants benefited from their experience with the Bosom Buddies intervention regardless of their participation rates.
The improvement in depression and the reduction in perceived stress are consistent with other studies of face-to-face groups.11, 65, 66 It may be that the intervention was effective because it created a forum where participants could reduce their social isolation. In the support group, participants could freely discuss their concerns without fears of burdening their social support network and they could offer specific coping suggestions to one another. This is consistent with participants' evaluation of their group experience. Participants expressed a level of enthusiasm and concern for one another that was not captured by the self-report measures. For example, their interest in each other extended beyond their cancer concerns and included such experiences as sharing and delighting in each others' wedding anniversaries, birthdays, and important family events. They also wrote about their unease when others did not post to the support group on a regular basis, asked the group moderator and researchers to contact “missing participants” on their behalf, and sent get well cards to participants who were hospitalized during the group. Some participants met with others after the group had ended and developed their own ongoing on-line support group. Participants were able to form fulfilling supportive relationships in an asynchronous format although messages were often disjointed and the conversations could be difficult to follow.
It is unclear, however, why participants in the Bosom Buddies intervention improved their depression, perceived stress, and cancer-related trauma scores, whereas they did not improve on the other measures. A few studies using the STAI as an outcome measure in breast carcinoma patients have demonstrated a lessening of anxiety with short-term interventions.67–70 There is little evidence of a long-term impact. However, studies conducted with other patient populations have shown that a change in depression is usually accompanied by a change in anxiety. Conversely, our intervention did not directly address anxiety management. Future groups should focus more directly on anxiety management as an important component of general well-being.
Likewise, the intervention did not lead to a change in the different measures of the Mini-MAC. Outcomes in other studies vary. For example Fukui et al.,13 the first group of authors to address the impact of a 6-week psychologic, face-to-face intervention on Japanese women with primary breast carcinoma, found significantly higher scores on the MAC fighting spirit subscale at the end of the intervention. However, another study using relaxation training, guided imagery, and biofeedback with American breast carcinoma patients could not demonstrate statistically different changes in the MAC, although fighting spirit scores had increased.71 The helplessness/hopelessness, anxious preoccupation, cognitive avoidance, and fatalism subscales may be too global and not concrete enough to be treatment sensitive. Future interventions should include psychoeducation to address specific coping skills. The CBI has yet to be tested by other investigators to prove it an effective measure in assessing women's ability to cope with their illness.
Although it is likely that the intervention content did not adequately address coping styles and self-efficacy, it may be that these constructs are resistant to change by a psychosocial intervention. Rather than addressing coping skills training, Bosom Buddies focused on the psychosocial consequences of breast carcinoma.
Many advantages to the delivery of web-based support groups over face-to-face groups have been identified, but disadvantages (e.g., technology challenges) do exist. For instance, some participants had difficulty connecting to the web page, which required personal instruction (e.g., telephone consultations) to resolve. However, considering that use of this technology was new to many of the participants, the participation rates were striking. Future groups may want to use a limited practice phase before the start of the group for members who will need additional help.
The majority (61%) of intervention group participants did not use the on-line journal. Participants may have recognized the potential of the program to communicate with others and may have used other media for taking notes or writing in a private journal. Three of our participants required hospital stays or absences due to illness and recovery from treatment. As noted above, participants expressed concern when others failed to log on for some time without warning. In the future, protocols should be established to instruct participants on how to prepare others for their absence. Despite our attempts to guide the weekly discussions, participants wrote about topics that often did not adhere to our recommended topics. We do not know how this affected the outcome. It is unclear how important the weekly content was to the group participants. Some participants indicated that the weekly themes helped them to consider topics they might not have considered otherwise and provided useful guidance in discussing these topics.
The use of web-based interventions presents a number of ethical issues. One of the most important ethical issues is how the participants understood the limits of the moderator's role. Participants were told before joining the study that the intervention was a psychoeducational support group. They were specifically advised that the intervention was not a form of psychotherapy nor was the intervention meant to serve as a substitute for psychotherapy. Although group members offered each other psychologic advice, the group moderator refrained from doing so. The moderator also advised group members that she did not read messages on a daily basis and that group members should not expect to receive immediate or personal feedback from her. Developers of web-based interventions need to be very clear about the level of psychologic care they will provide and how they will handle psychiatric emergencies if any arise during the course of the intervention.
The privacy of the participants represents a second important ethical issue. It is important to set clear expectations and guidelines for the participants. In this intervention, participants were instructed not to disclose any information they learned about group members to others and not to allow friends and family members to access the web site. At the same time, participants were advised of the limits of confidentiality in a web-based intervention. The Bosom Buddies site is password protected and every effort is made to ensure the security of the system. However, despite the fact that it is unlikely that these sites would be of interest to “hackers,” no Internet-connected system is completely secure. The potential exists that the site could be breached and private member data stolen. A more likely threat to the privacy of the group participants, however, is the security practices of the group members themselves. The Bosom Buddies participants engaged in a number of behaviors that could have violated their privacy and that of the other members by choosing obvious passwords and failing to adequately protect their passwords. Finally, the use of the Internet to deliver the intervention makes it impossible to prevent the group members from allowing non-group members to view the web site, read the postings of other members, or see the photographs of other members. Of course, in a face-to-face group, there is nothing to prevent group members from making similar disclosures, but the nature of the web-based group makes doing so significantly easier. Participants should be reminded regularly of the limitations of confidentiality and that, in some ways, they should treat their postings as potentially public documents. Manhal-Baugus,72 Childress,73 and Humphreys et al.74 have reviewed the ethical issues involved in web-based interventions.
This study adds to the growing literature on the benefits of various interventions for primary breast carcinoma patients, including the benefits of brief, unstructured, supportive-expressive group therapy,75, 76 brief education-based groups,66 and brief cognitive-behavioral groups.77 Although the results of this trial are promising, more research is needed before this support group format can be recommended to women coping with a diagnosis of breast carcinoma. Several methodologic limitations will need to be addressed by further research. Longer follow-up assessments are needed to determine whether the intervention effects are maintained. Medical diagnoses need to be confirmed by the review of the medical record and better tracking of additional psychosocial interventions used by participants is needed. Because the sample size was relatively small and participants were highly educated, the intervention should be tested with a larger and more diverse population. We do not know how effective the intervention would have been with less educated or less affluent women.
Directions for future research should include an evaluation of participant and component features such as group size, duration of the intervention, level of structure, specificity of cancer diagnosis, group moderator training and experience, psychoeducational content and coping skill training, possible treatment mediators, and comparisons between web-based and face-to-face group interventions.
The authors thank WebTV, Sony Electronics, and Philips Electronics for supplying the computer equipment for participants and Internet access for this study. They also appreciate Mary Anne Kreshka's contributions in allowing text from her workbook-journal to be used in developing our weekly content.
- 4Appraisal of illness, symptom distress, self-care burden and mood states in patients receiving chemotherapy for initial and recurrent cancer. Oncol Nurs Forum. 1992; 19: 1201–1209., , .
- 24Pew Internet and American Life Project. Available from URL: http://www.pewinternet.org [accessed 15 Jan 2002]..
- 26Cancer support groups migrate to Internet relay chat. Health Care Internet. 1997; 1: 83–89..
- 30Electronic support groups for breast cancer: a pilot study of effectiveness. Cancer. In press., , , et al.
- 31Self-help groups and the internet: breast cancer newsgroups. Int J Self Help Self Care. 2001; 1: 323–334., .
- 32Development and pivotal evaluation of a computer-based support system for women with breast cancer. J Psychosoc Oncol. 1993; 11: 69–93., , , .
- 34CHESS: ten years of research and development in consumer health informatics for broad populations, including the underserved. Med Inform Internet Med. 2001; 10: 1459–1463., , , et al.
- 36Dr. Susan Love's breast book. Reading, MA: Addison-Wesley, 1995., .
- 38Analysis of electronic support groups for recovering addicts. Interpers Comput Technol Electron J 21st Century. 1994; 2: 47–56..
- 39Computer-based self-help groups for sexual abuse survivors. Soc Work Groups. 1994: 17: 21–46., .
- 42Seeking social support: parents in electronic support groups. In: KieslerS. Culture of the internet. Mahwah, NJ: Lawrence Erlbaum, 1997: 157–178..
- 46The new face of self-help: online support for anxiety disorders. Dissertation Abstracts Int[B]. 1999; 59 (7-B)..
- 47Brief supportive-expressive group therapy for women with primary breast cancer: ATX manual. Stanford, CA: Stanford University School of Medicine, 1993., , , et al.
- 48Group therapy for cancer patients. New York: Basic Books, 2000., .
- 49One in eight: women speaking to women, a breast cancer workbook-journal. Grass Valley, CA: Sierra Nevada Cancer Center, 1997., .
- 50Workbook-journal significantly reduces posttraumatic stress disorder symptoms among rural women with primary breast cancer. Paper presented at the annual meeting of the Australian Psychological Society, Adelaide, Australia, September 22–24, 2001., , , et al.
- 53Measuring depression: the CES-D scale. In: LinN, DeanA, EnselW. Social support, life events, and depression. New York: Academic Press, 1986: 51–70..
- 54PCL-C for DSM-IV. Boston: National Center for PTSD-Behavioral Science Division, 1991., , .
- 55Manual for the State-Trait Anxiety Inventory (STAI). Palo Alto, CA: Consulting Psychologists Press, 1983..
- 61Mental Adjustment to Cancer (MAC) scale: users' manual. Sutton, UK: CRC Psychological Medicine Research Group, 1989., , .
- 62Problems in assessing prevalence and membership characteristics of self-help group participants. J Appl Behav Sci. 1993; 29: 166–180., .
- 63Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum Associates, 1988..